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    Community Voices

    The grief of chronic illness

    Today I cleaned out my bedroom closet, something I had been putting off for about 19 months. I kept putting it off because I was holding out hope that maybe my health would change and I might be able to do some of the things I once did.

    Acceptance of my limitations is hard for me and I find myself grieving my old self more often. It’s not like I have ever been particularly “well” but I was somewhat functional, much more than I am now. So, back to my closet. I cried. Not for the actual clothes, shoes, or objects themselves but for the memories (I have an eidetic memory) I associate with each item. I cried because with each thing I took out to put into a storage bin I would think of something or someone I loved, I missed. Things I would wear to work, to see family & friends, to go to fun events, even down to a t-shirt I wore to clean the house (who would have thought I’d ever miss that?! Lol). These are all things that seem to be in the past now, things that I miss dreadfully. Now my closet is filled with clothes that can be easily accessible for doctors, nurses, diagnostics, treatments etc. The way I dressed used to be a part of how I expressed myself; it would give me excitement to try new outfits. Now, I feel sad, hopeless, and feel reminders of how uncertain my future is. I’m not ready to fully accept my illness or my limitations but I am trying to be realistic and be patient with myself along my journey. I’ve kept a couple special items in my closet just to stay hopeful but putting my things into storage is a first step for me to be ok with my limitations. When I am ready, I will donate my clothing to a Women’s shelter and the women’s jail in my area that helps inmates transition back to the community. That will be something that I can still give, something that I can still do for others which has been what my entire life has been based upon.

    This post was just a way for me to release my sadness and emotions I face around the losses that come with chronic illness and disability. Maybe others can relate. #ChronicIllness #Disability #Autism #CPTSD #ChronicPain #AutoimmuneDisease #Jointpain #DegenerativeDiscDisease #Fatigue #Gastroparesis #Endometriosis #IdiopathicIntracranialHypertension #Depression

    9 people are talking about this
    Community Voices

    Are Magnesium supplements a game changer for Fibromyalgia and joint pain? Maybe 🧐

    <p>Are Magnesium supplements a game changer for <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7f00553f33fe992ab1" data-name="Fibromyalgia" title="Fibromyalgia" target="_blank">Fibromyalgia</a> and joint pain? Maybe 🧐</p>
    6 people are talking about this
    Community Voices

    I didn't sign up for this

    Well apparently I did lol
    Today I hurt and it sucks. This is not how I thought or saw myself as I approach 30. 29 stiff, tightness, achy, numb, weak, and irritated AF! I'm simply tired of waking up like this especially with a toddler who needs me. I feel unfit in so many ways. I'm struggling to keep up, so damn uncomfortable and wtf is up with the scalp pain!? Is it related to my nerves ugh sigh I digress. I know it could be much worse. I guess it's good all my test results came back fine....🤯😳🤒
    It feels like all I can do is wish for a miracle and in the meantime learn to deal and manage. Crazy it took 8 years to get to this defeated point where I guess I'm fully surrendering to the fibromyalgia and learning to accept life with chronic pain......siiiiigh. 😤
    So much uncertainty, so many symptoms and random sensations.
    Im not sure how to move forward in life. What's next? How to support my sun and I? I am grateful for how far I've come and all I've learned in terms of lifestyle transitions. And now my arms are really hurting so peace love and many warms gentle hugs to you 💛🙏🏿 #Fibromyalgia #ChronicDepression #ChronicPain #newmom #tired #ChronicFatigue #Nerve and joint pain #JointStiffness #Jointpain

    8 people are talking about this
    Community Voices

    Is anyone else with ME/CFS from Arkansas?

    I have been in touch with #ME /Action due to my interest in starting an ME/Action state chapter. I was given instructions on how to go about the initial steps to start the process and one of the first things on the list was to join my state’s ME/Action Facebook group and scope out potential individuals that would make good candidates to serve as chairs for the chapter. I quickly realized that there was less than 50 people that were members of the Facebook group! I was totally shocked. I expected there to be more. So, I’m doing a shoutout on here in hopes of drawing attention to what I’m trying to do and to expand (if possible) the Facebook group to get more people interested in being a part of it and gaining much needed support as a patient or a caregiver in Arkansas. We have very little access (if any) to ME/CFS literate physicians, therapists, etc. so I want people to be able to access support where they can get it here in this state. If you are in Arkansas and are living with or caring for someone with ME/CFS, go check out and consider joining the #ME /Action Arkansas Facebook group. Hope to see ya there!!! #MyalgicEncephalomyelitis #MightyTogether #Fibromyalgia #ChronicFatigue #exhaustion #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Migraine #RestlessLegsSyndrome #MastCellActivationDisorder #Fibromyalgia #Gastroparesis #IrritableBowelSyndromeIBS #InterstitialCystitis #cognitiveimpairment #Jointpain #ChronicPain #pacing #Insomnia #Upallnight #CheckInWithMe

    Community Voices

    Seeking diagnosis support

    i've struggled with chronic pain, fatigue, and mental illness as long as i can remember. i was raised in an emotionally abusive situation that denied me early medical intervention. i'm 21 now, on year 2 of being on my own and am finally seeking diagnosis.

    i potentially have rhumetoid arthritis, lupus, or even EDS, since my pain is very localized to every since joint in my body. i meet with a new GP soon to pursue diagnosis and real medical care for the first time in my life.

    im feeling really scared that its not going to work out yet again, im anxious as hell, i just wanna skip to the part where i at least know what i have so i can pursue medical intervention. im sick of being in pain all the time and im grieving that i cant work right now and that my parents never got early intervention for me. i know it gets better but for now everything is scary and im just seeking more support from other disabled people.

    #AdultDiagnosis #Diagnosis #ChronicPain #Jointpain #ChronicFatigue #Burnout #Flareup #Lupus #RheumatoidArthritis #EhlersDanlosSyndrome

    17 people are talking about this
    Community Voices

    HELP! How do you cope with joint pain?

    <p>HELP! How do you cope with joint pain?</p>
    2 people are talking about this
    Community Voices

    How do you describe your health conditions?

    Between my #SpeechImpediment my #Scoliosis (technically it’s not that but similar) my #ADHD and other related stuff, I describe myself as “God did a science experiment when He made me and got interesting results.”

    When I describe my musculoskeletal system (wonky #SpineProblem #BrachialPlexusInjuries and #Nerve and joint pain #Jointpain ) I just say “my musculoskeletal system is a series of unfortunate events.”

    Anyone else have a fun/creative way to describe their wonky body/brain?

    1 person is talking about this
    Community Voices

    Pain in arms while driving #Hypermobility

    I get really bad pain in my elbows and forearms while driving (also ankles and feet). I don't know the cause but it's like my bones are arching, it can get unbearable after long periods of time. My hands also go numb.

    Does anyone else experience this? What do you do about it?

    #EhlersDanlosSyndrome #JointHypermobilitySyndrome #ChronicPain #Jointpain

    2 people are talking about this
    Community Voices
    Community Voices

    What's one piece of exercise equipment you'd recommend to someone restarting exercising? A Sofa cycle? A rowing machine?

    Hi Everyone,
    I already have an exercise bike but due to a mixture of left knee pain, fatigue and slight boredom I haven't exercised in a while😅

    I'm considering getting a cheap rowing machine or a sofa cycle? How have folks with #Fibromyalgia found using rowing machines? Do people with sofa cycles usually also have exercise bikes? Ideally I'd be swimming, but pandemic...Lockdown... 🙄

    Really appreciate any/all help and advice 🌻🌻🌻

    #IBS #Anxiety #Depression #ChronicPain #ChronicFatigue #Jointpain

    19 people are talking about this