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feeling discouraged , no support from family

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Posted 2/10/2015 3:34 PM (GMT 0)
cry was w/ some cousins, from the process of time , thought some understood more. Frustrated. I had a herxing episode, convulsions , one moment i was ok

Than got tired of talking than got really tired, need to lay down... I soon went in the other room to have privacy to have convulsions . And so they did not have to see

it. That was couple days ago and today she told me, next time to go to a bedroom. I told her i dont always know when it is going to happen. Even when they see evidence of a real disease.... I dont get the support i thought i had... Disapointing.

Post Edited (wellbeautifulspirit) : 2/10/2015 9:09:00 AM (GMT-7)

Posted 2/10/2015 4:56 PM (GMT 0)
So sorry to hear this! You're so right, it is so incredibly disappointing when family reacts in this unsupportive way. I hope they can find a way to see that this only hurts you. This past Christmas my family was joking about how angry I was as a teenager and they can't believe I'm calmer now. I told them it was "lyme rage" that many kids with Lyme exhibit. They thought it was hilarious that there is an actual name for all my outbursts. Super hurtful. I had to go take a walk before I started raging on all of them!

You've chosen a gorgeous online name, WellBeautifulSpirit. :-) I hope you can shake off your cousin's insensitivity and continue to focus on you getting well. Sending (((hugs))) your way!

Maui
Posted 2/10/2015 5:22 PM (GMT 0)
:) thanks maui, sorry about what you went through and glad u r doing better from when you were growing up. Yet not respectful to hear comments like that years after the fact. Yes, the support from this forum , from you helps immensly. Thanks.
Posted 2/10/2015 5:49 PM (GMT 0)
wbs:

May I ask what causes the convulsions? Is it because of Lyme Disease or herx or is it a separate matter?

I am so sorry you are going through this! I think many of us are in this situation with family members not getting it, but having convulsions makes everything worse. Maybe she was in a bad mood. No matter how hard it is, I would just let it go and hopefully she will change. It is not until we are hit ourselves by something that we really understand what the other person goes through. It's sad, but please don't let it get to you. I don't quite understand how you bothered her if you were in a different room. Someone should watch you while you have convulsions, anyway, for safety reasons. Please be patient and hopefully she will come around.
Posted 2/10/2015 6:50 PM (GMT 0)
Like your name says - you have a beautiful spirit. Please don't let the ignorance and insensitivity of others make you feel bad.

There is no excuse - even if they don't understand Lyme disease...to not be sympathetic and caring when someone is obviously feeling so bad and suffering.

I hope there are others in your life that are kind to you and supportive.

I wish I was there to give you a hug. So sorry you had to experience that.
Posted 2/10/2015 7:25 PM (GMT 0)
I'm so sorry they were so insensitive, especially asking you to go to a bedroom next time you have convulsions! I'm glad you have this forum to go to when you're feeling let down. We understand and care.
((((HUGS))))
Posted 2/11/2015 4:49 PM (GMT 0)
Thanks, yes so grateful for this forum, the support, understanding, kindness, helps immensly, thank you all, hugs
Posted 2/11/2015 5:01 PM (GMT 0)
wellbeautifulspirit-

Sorry, I am a little weepy today but your story really upset me! They asked you to hide yourself in another room while you have convulsions? I am speechless...

Do you have other friends/family members in your life that can help you through this and stay by your side when you need them the most?

I am so sorry this happened :(
Posted 2/11/2015 10:40 PM (GMT 0)
That's terrible! You poor thing. I'm sending you a big hug from tick infested Saratoga, NY!

I wish I could go all karate on some people! Lol.
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