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    Managing Spoons

    #spoons I can't for the life of me space them out. Plus, i suck at recharging. It takes me forever to get a full battery.

    Any tips? #EhlersDanlosSyndrome

    12 reactions 5 comments


    I’m a #CRPS fighter that is loosing my mom, who was my champion my rock. Cancer sucks.
    All my tools for dealing with my Pain have been used, my #spoons are gone.
    I’m trying to be open to my other family but I’m scared and to be sure not mighty. What’s some experience of other who has lost a caregiving mother

    1 reaction 3 comments

    Shoutout to the spoonies who use compression garments!

    I've just started wearing 30mmHg waist-high compression, and it's CRAZY how much effort it takes to get the darn things ON! I can't help but laugh as I wrestle myself into them. "I don't always exercise, but when I do, it's the 30 minutes of trying to put on compression pants". Haha. Although in all fairness, compression has been INCREDIBLY helpful for my POTS symptoms. And if I'm not mistaken, it has also been excellent for feeling secure (gotta love that PTSD, Panic Disorder, and Depression). Overall 10 out of 10, even if it takes a whole spoon to get into them.

    #compression #ChronicIllness #posturalorthostatictachycardia #POTS #spoons #SpoonTheory #anxeity #Depression #PanicDisorder #PTSD

    17 reactions 5 comments

    This may sound crazy, but I think I can “use” more #spoons

    So, I am looking for some advice. I think I am able to add more spoons because I believe I can do more. I have been using the standard 12 spoons. But I have more energy to give. While it has been well with the 12 spoons, I know I can “do” more. I require a structure like this. I just need an adjustment. How would I go about assigning spoons to a task? I know this sounds weird but w am looking for suggestions. Thank you!

    2 reactions 1 comment

    How are YOU really doing?

    It's a simple question that's not always simple to answer, but I want you to genuinely think about it; How are YOU?

    How many spoons do you have today and how do you plan on using them?

    Are you doing at least one thing for your health, one thing for your surroundings, and one thing special for you?

    For instance, today I've taken my meds and plan to shower today, I put up laundry, and I made myself coffee. All of which, on a bad day, I can't do.

    So, that brings me back to my original question: How are YOU?

    #MentalHealth #checkin #mentalhealthcheck #spoons #youmatter


    No spoons #spoons

    I struggle daily with multiple chronic illnesses. Some days are great. I feel normal and like I can do anything. Then I pay for it. Today I am struggling with no spoons. None. It is discouraging, depressing, annoying, frustrating, and it makes me angry. I am young and I shouldn't be this way. I know chronic illness doesn't care about your age. It doesn't care about your race. It doesn't care about your sex. It doesn't care if you have responsibilities. It just doesn't care. It takes and takes until you are left with nothing. It is a silent beast that can not be seen. It strikes when you least expect it. It waits to deplete you. It waits to suck the energy and joy from life. My therapist says that I am an empath and I have to save a spoon to protect myself from others energy so I am not overwhelmed. But there are never enough spoons. My children are disappointed that I can't participate in their activities. I know my husband is disappointed (although he will never say anything) that I can't do the same things that I used to. I feel trapped in my body and in my bedroom. In the cold dark, quiet, lonely place . I feel myself trapped in a desolate expanse where my diseases are my prison guards, where there is no hope of escape. My family outside my house does not understand. And because of the fog I feel stupid. I can't find the words to explain. Is this the rest of my life? Not even 40 and trapped in a place where I long to escape? Will I be able to participate when I have grandchildren.
    ? Will I be in this prison forever? Can I ever have hope of a cure? Or even a effective treatment? Is this what I have become? This day was one doctors appointment. This day was changing my sheets. This day was bathing myself. And this day I was left with no spoons. Those precious precious spoons that I long to horde. That I long to hang on to. Just one precious spoon that I can use to fight the beast that has taken over my life. Maybe tomorrow I will have the spoon to stave the beast and for one day keep the beast at bay. Just one extra spoon. Until then, I shall remain here, with no spoons, and hang to the fleeting hope that maybe tomorrow, maybe the next day, maybe one day, I will have the spoon to fight the beast.

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    Riverside #Reading

    When your #spoons vary on the daily, if not hourly, having a solo adventure can feel like a #Miracle and when you can’t eat solids, you spend lunch money on books.

    Yesterday, I spent some time down by the water appreciating the local poet laureate and the wind as it whipped my hair.

    #Books #Poetry #DistractMe #Gastroparesis #Energy


    Energy levels #spoons

    I was diagnosed with vasculitis two years ago. I Still mourn for my former good health and dont know if I'll ever get back to normal. But I guess I'm getting used to a new normal where I save my energy( spoons) for the important stuff.



    #spoons ? I really need some

    What is it about 3:00 everyday? I have weakness and migraine everyday. Don't know who to talk to...noone takes me serious. I am left to diagnose this myself?
    Drs and nurses pass me off with no advice..direction...or help


    Fighting My Body Ranting and Raving #ChronicPain #Fibromyalgia #MyalgicEncephalomyelitis #Depression #Anxiety #ChronicMigraines

    #ChronicPain #Fibromyalgia #MyalgicEncephalomyelitis I did something fun on the 15th and 16th. Out of town with a friend without my daughter, don’t remember the last time I did something fun without her (I’m okay with that though because I don’t get very much #spoons to spare. She’s number 1, the spoons go to her first) but yeah I did a thing even though I had been having some higher pain and higher CFS just two days prior. I had a good time it was hard though pushing through symptoms, it’s always hard, but it’s just extremely tough when your partaking in any activity outside of the norm. Anyway I was rudely greeted with a FLARE as to be expected CFS , Fibro, Depression, Anxiety all came to visit for a huge amped up party 🎉 , I missed three days of work and an entire weekend of life, type of party. It’s day 9 and pain is bad bad bad CFS has me in zombie mode. I’m trying to manage work (work from home still because of Covid) and I planned an activity to do with my daughter for this years unique Halloween (I typically avoid planning all together) . Now I’m stressing cause I’m still basically bed resting, unless I’m on my computer trying my very hardest to have a productive work day. Annnnd well my period is coming I flare bad prior to “her” arrival and I get the worst longer lasting migraines. Just praying 🙏🏼 this never ending symptom flare eases up and that my usual menstrual cycle induced symptom flares just choose to skip torturing me this month , they always wanna fight. I just want peace in my body just for once atleast for two days, so I can have fun with my daughter. Sighhh 😔 #praying