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How many people are absolutely fed up with the unhelpful and unwanted advice???

All I want is to be heard. To be able to say what is making me struggle today. And I'm so tired of the advice. My muscles are jumping. It's very painful. All I want is to say that so that people stop looking at me like a lunatic. I'm not even looking for sympathy, I really don't want it, I just want to acknowledge what I'm going through. And explain why I just spilled water everywhere. And explain why I couldn't eat my dinner without knocking food on the floor. And explain why I jumped/fell into the wall when I tried to answer you. I don't need to be told to try to stretch it out, that makes it worse. I don't want to be reminded of electrolytes, I've got those in check. I don't want anyone suggesting some magical solution of things that our community has already thought of and done a million times with no results. All I want is to be heard. To be able to say that this sucks. To have that space to be honest in.

Alright, stepping down from my soapbox now. Anyone relate? I would love to hear/read your story. You have a safe space with me.

Today has been super hard, lots of symptoms, tons of collisions, a lot of stress. Work and home. So I decided to turn it around. I threw candy at my coworkers as I robot-walked past them. They couldn't be mad about the flying things because it was a gift. And it was candy. The coveted item of any office. And when that wasn't enough, I sent pictures of squirrels being squirrelly (pretty sure I spelled that wrong, I'm tired) via email to get laughs. That helped.

Tell us what you're going through right now. I haven't met any of you, but you mean the world to me.

  1. To be clear, when throwing candy wasn't enough for me to turn it around. My coworkers are great, even though they don't understand. Throwing candy gives me joy because I get to give joy through chaos. And as a disclaimer, I intentionally aim to miss. 😀

    1. I appreciate you so much for sharing you're feelings here with us. I get just wanting to vent and be heard with no sympathy or pity party involved. Simple acknowledgment and feeling seen goes a long way and unfortunately it can sometimes be so hard to come by. You're dealing with a lot and still trying to make the best of it which is so commendable and admirable. That alone speaks volumes on how you resilient you are. And I simply love how you choose to make your co-workers feel good in the mist of your pain. That was so selfless of you and I know they appreciated it so much and it gave you some healing as well. That's a win-win for everyone and it's so cool that you feel open and supported there enough to do that. (I wish I could have caught some of that candy, haha)! Continue to press onward and keep the positive energy flowing! We are so glad to have you here in our community. Best wishes, Latoya (Team Member)

      1. Oh, goodness, ! Your post will probably touch a nerve for many of our community members. Who here hasn't been subjected to unsolicted advice and just a general lack of empathy and understanding? It's frustrating and can be downright demoralzing, especially when you're already not feeling so great.

        I do love that you do your best to turn it around and to be a positive influence at your workplace.

        You're definitely not alone in this.

        Thank you for posting. I hope lots of our members start chiming in, as I know lots of them have felt the way you do.

        Best, Erin, Team Member.

        1. Has anybody suggested you try bee venom? Of all the advice I used to be given when I first got sick and was out and about where people could see me to give me advice, I must have been told about the benefits of bee venom elebenty billion times. I got really tired of hearing about it, too. I hear you, and I send you a couple of stingless bees to bring you some honey without stings. Bees have their uses! All the best, Therry, a Team Member

          1. I see your bee venom and raise you rosemary oil. 😁 Have you heard that if you rub it on your temples that your vision problems will go away?! My absolute favorite has to be the "have you tried stretching it out" when my muscles go all jerky and everything starts trembling.

            Oh, and yes, I have had bee venom recommended about a million times. And I haven't even gotten the diagnosis yet, most of my symptoms weren't visible symptoms until last December and I have my MRI finally coming up next week. The diagnosis was first floated to me by my neurologist in 2010 but no visible lesions then.

            Thank you so much for sharing! Sending all the love and positivity, and none of that rosemary oil! 😂

          2. ,
            I'm so glad you found this community.
            You have an incredible perspective.
            I wish you all the best with the upcoming MRI. Please keep us updated when you get a chance.
            ~Doreen (Team Member)

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