Topic: Sometimes I Wish I Could DIE and Get This Over With!
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
How is a person supposed to live with chronic meningitis that no amount of IV seems to touch?
I'm in a very black mood and dark place. Had my special-needs son's annual meeting today and through the throbbing haze of my pounding spine, neck, and head pain I hear the social workers describe my son as behaving inappropriately sexually and that he "steals" on a daily basis. My son is not a perverted thief! He is intellectually disabled! If he likes what's on your dinner plate he will eat it. He is going through puberty so he has his hand down his pants once in awhile. He isn't touching anyone inappropriately.
I was too sick to argue. I could barely see straight. And then when I leave the care provider's house, my son starts to cry because I'm leaving without him. I cried all the way home.
Tonight my husband tells me I always seem to get worse Lyme-wise whenever I'm around our special-needs son. He said I must be psychosomatic.
I told him not to EVER say that to me again. That is one of the worst things you can say to a chronic Lyme patient. After 8 long years you'd think he'd know that by now.
I have no idea if or when this meningitis nightmare will end, but it's pretty much been part of my life for 3 years now. It is so much worse, though.
I'm just rambling from my dark cave. Feeling pretty lonely and petrified in here.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I feel for you - I have in a lighter way, with the meningitis, what you must have more strongly - I am a constant chiro neck patient. I wonder if more medical exploration could be done about your meningitis situation. I don't know your medical history, I don't even know all the possible ways to treat it - I just wonder if there is a list of treatments that can treat it that you haven't explored yet? And that's a medical question.
About the rest - it's your family. I wouldn't put a label on it. You have a right to have feelings about your family.
Posts: 13116 | From San Francisco | Registered: May 2006
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lymeladyinNY
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Member # 10235
posted
I will see Dr. J's assistant next month. I don't know what I'll do if spending a fortune with him doesn't help.
Meanwhile, really sorry to be so down. I'm so sorry, very very sorry.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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BoxerMom
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Member # 25251
posted
Big hugs. I hope you find some answers. And some relief!
posted
I feel very sad for you. I hope you find some help soon. I can't imagine what that would be like with the meningitis.
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jackie51
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posted
I'm so sorry you are where you are. I hope that you find some relief from the pain.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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kgg
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Member # 5867
posted
I am so sorry that you are going through this. It sounds like a really hard time.
My husband had a similar observation as yours, except that he did not accuse me of being psychosomatic. At first I was not happy, to say the least. But then he continued saying that when my son is not doing well, I don't do well. And he thought it was the stress of my son not doing well that affects me. Reluctantly, I had to agree with him.
Stress is our enemy. What you went through at the annual eval was stressful. You would have had to be in a coma not to react to that stress. Especially since you went there already feeling horrible.
I understand. Be gentle with yourself. I hope that you find some relief soon.
Gentle hugs, Karen
Posts: 1685 | From Maine | Registered: Jun 2004
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lymeladyinNY
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Member # 10235
posted
Thank you - yes, my husband went on to explain that the stress seems to make me worse. I got defensive at his choice of words.
He told me he resents all that Lyme has taken from him. He resents having so many medical bills and having to be my caregiver.
He says it's not me, it's the disease. It has been terribly hard on our marriage.
And I am so miserable right now! All this emotional stuff is just irritating my condition even more. My other two sons are horsing around and fighting right now. It's too much for me to deal with. I think, "I can't wait for school to start," but whose got to get them up and out the door? Whose got to deal with all the demands from the school and help with homework and go shopping for supplies? Me, who can hardly lift her head off the pillow.
Wow, I'm having such a pity party! I apologize. Maybe I should call my husband at work, tell him I love him, then go back to sleep. Spongebob is now occupying the kids. Thanks, Spongebob!
- Rambling Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
This is so rough... and I am SO sorry you are suffering so much. Yes, having to leave your son to the care of others is bound to make you worse!! The stress must be horrific!!
I hope Dr J can help you.
Lyme is worse than a thief!!! It steals so much from us.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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phyl6648
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Member # 28522
posted
I am so sorry you are going through all this. Wish I could help you in some way. Prayers that your trip to see Dr. J will give you some hope.
For what it is worth I have thought what you posted. "Sometimes I Wish I Could DIE and Get This Over With"
At least my children are grown but did help raise 3 of my grandchildren and was trying to care for my 2 great gran babies but had to give that up and I miss them so much.
This disease takes so much for us, well I feel it has taken all of me.
Sorry to ramble, even though I am not in your shoes I sure can relate to some of your feelings.
Please let me know how your Dr. visit goes. Is it the Dr. J in DC?
Prayers and hugs.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
I just noticed recently that when i take my dose of doxycycline my joint pain disappears, at least for an hour...have you tried doxycycline for an extended amount of time? Sorry to hear your in pain, the neck pain and stiffness is the worst, i believe it can get better hang in there. Also, spongebob is awesome http://www.youtube.com/watch?v=Wgy0IqUAi2MPosts: 113 | From south dakota | Registered: May 2011
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karenl
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Member # 17753
posted
Most people who are so horribly sick later on find mold or parasites. Is your house tested and did you do the full K protocol incl.flukes and how long?
Posts: 1834 | From US | Registered: Oct 2008
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posted
I know what you are going through, I have been like this for close to 16 years, Had all signs of menigitis from lymes and still suffer from neurological pains. I know it seems bleak, i have been in and out of hospitals, Dr.'s, specialist and infectious disease doctor whom finally put me on an IV pic. This did help with spinal pain and headache but it seems chronic and starting to begin another cycle. Neurological pain is my worst symptom and has always been. Sharp shooting pains like someone is sticking a knife in me. This is a horrible disease that affects me not only physically but also psychologically. I mean not only does a person have to deal with the disease alone but also ignorant people who don't understand, including mainstream medicine whom just don't want any part of it. I know it is extremely difficult and at times I feel like giving up also. There are many times I don't feel like going on anymore either. Hang in there though, this is becoming an epidemic and all over now. Answers are coming. I keep you posted on anything new I come across. diane
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi, thank you for all the responses. Yes, phyl, it is the Dr. J in DC. I'm filling out paperwork before my initial visit and it has been like writing a term paper - sheer torture!
I LOVE Spongebob, tickbiter. Ever since I first watched it in 2001 I have been a devoted fan. I have always let my children watch him - I don't really get why some parents don't like their kids to watch him. Perhaps it's the underwear!
No, Karen, I haven't done anything in regards to mold or parasites. I will be starting humaworm soon. I know my basement has some mold issues. I feel too overwhelmed right now to deal with it - I know that sounds lame, but it is how it is.
I am right there with you, Diane. Thanks for writing and letting me know I'm not alone. Yes, the neurological stuff has always been the worst for me, too. Terrible headaches that make me scream, repeated bouts of meningitis, babbling confusion, inability to walk, talk, or write, etc. and ad nauseum.
I'm still fighting viral meningitis as I write this, but it has eased some today. I will hang in there, if for nothing else, my lovely family.
Love and hugs to all - Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
The best time to wear a striped sweater is all the time...!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
WOW, I CAN DEFINATELY RELATE TO THAT TOPIC. Sometimes,I feel the same way, just do it and get it over with. You feel so tired and weak and you have to deal with the real world. Especially dealing with something so important but you are too tired to fight with anyone. I am so sorry. I do know and have no suggestions but to take tylenol, anti anxiety, green tea and pain meds before you have to deal with this. It is the only way for me to get through the rough times.
-------------------- 30 Supplements Awaiting new protocol Diagnosed 2nd time 9/08/2011 with positive western blot No co infection Posts: 74 | From Pine Island, NY | Registered: Sep 2010
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RDaywillcome
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Member # 21454
posted
NOPE! Not an option! We all feel this way, but something in our lives tell us it's not worth it!
Please be strong and know that there is more to live for. We love you and want you to live! Don't let this disease WIN! We Love YOU!
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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RDaywillcome
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posted
PLEASE KNOW THAT YOU ARE LOVED!!!!!!!!!!!!!!
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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RDaywillcome
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Member # 21454
posted
Guess what? Living life and enjoying my grandchidren!
It sucks big time but guess what? It goes away! Living life and so HAPPY! Trust me! It's WORTH IT!!!!!!!!!!!!!!!!!!!!!!!
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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