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Thread: Hi everyone, I am new to the Area and Have lupus as well.

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    Default Hi everyone, I am new to the Area and Have lupus as well.

    Hello everyone,
    My name is Trish and I'm new here. I also have lupus and had it for 4 years now. I hurt and ache all the time, feel tired, fatiged. What I want to know is Why my feet hurt and ache all the time? Does it have anything to do with Lupus? I try to take care of my self.Does taking vitamins hurt to take having lupus? Sometimes I feel like I'm the only one who has it and also feel like no one understands me. I am married and my Husband tries real hard to understand me. But when I say I hurt, he comments I hurt too. I really don't think he understands me. Especally when I need some attention. I hope you all are doing alright with Lupus. I will keep you all in my prayer's for I understand how you feel.
    trish

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    Ok, I just replied to your post and it got deleted because I used a website link... but what I was saying is that I know how frustrated you must be that your husband doesn't understand what you mean when you say you hurt. :x My boyfriend didn't understand either, and he would act like nothing was wrong or say "I hurt too". He would tickle me and it would hurt so bad I would cry and he still didn't get it. But I showed him the "spoon theory" (you can find it on butyoudontlooksick dot com) and now he seems to understand it better. We refer to spoons all the time and he knows when I really don't feel well.

    I hope things get better for you and that you are feeling well - welcome to the forum and don't forget we're here for you!

    Emily

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    Hi Trish,

    Welcoming you with open arms. Your words, your feelings, are safe here. We know.

    We hurt more than the average and that is hard to explain. In the end it feels like we are battling to win..who hurts the most with our spouses, with our Mums. And it is okay they don't get it. We get it. Trying to explain it with someone who doesn't have a chronic illness, chronic pain only creates more stress on us.

    When my Mum was dying of terminal cancer, I didn't get it. I could only imagine and equate it to my experiences. All I knew she was dying, and imagined her fear, imagined her pain. Today, 12 years later I only get it a tiny bit as my fears my pain is small compared to what hers was. I know now just enough to know I wish I had lived each day with her like it was her last, but I kept hoping, in denial.

    So, my take on it is…if they don't have it, a person may not ever understand it. So, I am still learning not to waste time explaining to others outside this forum over and over. Here..I vent, cry, laugh, stammer, growl, act silly, complain...we get it.

    Sometimes when we want attention, we have to initiate. Wrap our arms around their belly and say hey, hug my head. Hugging my head, I feel love like a little girl would. Weird…my thing. You will find what works for you with your husband.

    We have to learn to ask for help, without guilt. We have to learn to say what we need, without shame. Don't be afraid to say what you need.

    Heck yes..my feet hurt. Feels like walking on marbles. And after sitting my ankles feel like they will come unhinged. It is our normal, so indeed…you are normal. After dosing with Plaquenil the pain has decreased. Usually I have it early in the morning…and from prolong periods of sitting. Are you taking any prescriptions?

    Consult your physician about the vitamins you would like to take. Mine had advised... it was okay for me to take Fish Oils, B-complex and he suggested CoQ10.

    Keep minding your health and handle yourself with TLC,
    Oluwa

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    Default Thank You Emily for your support and caring!!

    Quote Originally Posted by ermerrif
    Ok, I just replied to your post and it got deleted because I used a website link... but what I was saying is that I know how frustrated you must be that your husband doesn't understand what you mean when you say you hurt. :x My boyfriend didn't understand either, and he would act like nothing was wrong or say "I hurt too". He would tickle me and it would hurt so bad I would cry and he still didn't get it. But I showed him the "spoon theory" (you can find it on butyoudontlooksick dot com) and now he seems to understand it better. We refer to spoons all the time and he knows when I really don't feel well.

    I hope things get better for you and that you are feeling well - welcome to the forum and don't forget we're here for you!

    Emily
    THAN YOU HUN FOR WELCOMING ME INTO THE FAMILY OF LUPUS! FOR CARING AND ESPECIALLY LOVE AND SUPPORT FROM YOU ALL. YOUR A BLESSING AND THANK YOU FOR THE ADVICE! TRISH :cry: THIS IS HOW I FEEL TODAY BUT I AM TRYING TO BE IN GOOD SPIRITS. YOU ALL ARE IN MY PRAYERS!! LOVE ALWAYS, TRISH

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    Default I APPRECIATE THE OPEN ARMS AND HUGGS AND CARING AND LOVE,ETC

    Quote Originally Posted by Oluwa
    Hi Trish,

    Welcoming you with open arms. Your words, your feelings, are safe here. We know.

    We hurt more than the average and that is hard to explain. In the end it feels like we are battling to win..who hurts the most with our spouses, with our Mums. And it is okay they don't get it. We get it. Trying to explain it with someone who doesn't have a chronic illness, chronic pain only creates more stress on us.

    When my Mum was dying of terminal cancer, I didn't get it. I could only imagine and equate it to my experiences. All I knew she was dying, and imagined her fear, imagined her pain. Today, 12 years later I only get it a tiny bit. Just enough to wish I had lived each day with her like it was her last, but I kept hoping, in denial.

    So, my take on it is…if they don't have it, a person may not ever understand it. So, I am still learning not to waste time explaining outside this forum. Here..I vent, cry, laugh, stammer, growl, act silly, complain...we get it.

    Sometimes when we want attention, we have to initiate. Wrap our arms around their belly and say hey, hug my head. Hugging my head, I feel love like a little girl would. Weird…my thing. You will find what works for you with your husband.

    We have to learn to ask for help, without guilt. We have to learn to say what we need, without shame. Don't be afraid to say what you need.

    Heck yes..my feet hurt. Feels like walking on marbles. And after sitting my ankles feel like they will come unhinged. It is our normal, so indeed…you are normal. After dosing with Plaquenil the pain has decreased. Usually I have it early in the morning…and from prolong periods of sitting. Are you taking any prescriptions?

    Consult your physician about the vitamins you would like to take. Mine had advised... it was okay for me to take Fish Oils, B-complex and he suggested CoQ10.

    Keep minding your health and handle yourself with TLC,
    Oluwa
    THANK YOU HUN FOR RESPONDING AND MAKING FEEL VERY LOVED AND WELCOMED. I'M TRYING TO BE IN GOOD SPIRTS TODAY BUT IT'S VERY HARD :cry: THIS IS REALLY HOW I FEEL. I STARTED TAKING VITAMINS CALLED CENTRUIM. IT GIVES ME A LITTLE PICK ME UP BUT I SURE DO WISH THE PAIN WOULD GO AWAY AND I KNOW YOU FEEL THE SAME WAY. AT TIMES I WILL TELL MY WONDERFUL HUSBAND I NEED A HUG AND BOY THAT SURE HELPS OUT ALOT. HE IS VERY CARING AND LOVING PERSON. I JUST WISHED HE WOULD BE MORE UNDERSTANDING ABOUT LUPUS. HE TRIES REALLY HARD AT TIMES. FOR WHEN I TELL HIM I HURT AND I DON'T MEAN TO COMPLAIN HE SAY'S "I'M SORRY HUN" WHICH MAKES ME FEEL ALITTLE BETTER BUT HUGS ARE THE BEST. THANK YOU FOR WELCOMING ME WITH OPEN ARMS. YOU ALL MAKE ME FEEL LOVED AND THAT I'M NOT THE ONLY ONE SUFFERING WITH THIS MESS. I PLACE YOU AND EVERYONE ELSE HERE IN MY PRAYER'S WHICH I HOPE YOU DONT' MIND. I LOVE TO PRAY. IF YOU EVER NEED ME JUST LET ME KNOW, FOR I GET ONLINE EVERYDAY. I WILL BE HERE FOR YOU TOO! HERE IS A HUGG FOR ALL THE ONES THAT HAVE LUPUS AND NEED HUGS- XOXOXOXO FOR I UNDERSTAND. AND THANK YOU FOR CARING. LOVE ALWAYS, TRISH

  6. #6
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    Hi Trish...

    Thank you for all your prayers, love, hugs and kisses. Sending many your way too.

    Praying, there is never too much. I don't mind. In any faith, in any dialect... The power is in the faith to believe in Him. I believe.

    There is a forum for Faith, check it out. You don't have to limit your prayers or words of your faith to just there though. Spread it all over the forum. I do. Amen.

    Complaining is okay, never aplogize for your pain. Some may perceive it as complaining, I receive it as sharing and allowing another to release the burden pain leaves on the mind and spirt. The pain our illnesses bring to our body and the bleak thoughts it brings to our mind. It all hurts, doesn't it, hey?

    Hope this new day has given you an uplift to look forward to the next,
    Oluwa

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