posted
So my brother has been taking Mepron for about two months, although I'd like to say it feels like forever. One of the side-effects of Mepron (or so I'm told) is irritation and just plain not-niceness.
My mum (char, for those who don't know) is extremely patient with him and always understanding. She may have her little moments but she looks like a saint compared to me.
Douglas is twelve years old and has azpergers which he gets from my dad's side. Between the both of them there are way too many "Ooh!"s "Ah!"s and "Eee!"s. I give him a playful punch when I'm in a good mood and he's red in the face and shouting. And it's not like I'm not trying! Ever since he's been on Mepron he's overly overly senstitive and all that comes out of his mouth are complaints.
Example: we happened to be on a road trip (as far as I'm concerned we are never traveling by car together ever again) and he was having a really bad day. I think I heard "my insert body part here hurts!" ten times literally. I finally gave him a piece of my mind (whilst we were stopping we fought and I told him to shut it) and he turned to sobbing and yelling.
I'm wondering how I'm going to keep my sanity. We usually stick to seperate sides of the house since he likes his alone time from me and my mom but when we're together... I'm completely barking mad... ... and I honestly don't like being so upset at him
EDIT: I have Lyme disease also. The only one in my family who doesn't have it is my father. Sorry for any misunderstanding.
[ 27. August 2006, 12:59 AM: Message edited by: Alexis ]
Posts: 28 | From North Carolina | Registered: Jul 2006
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Carol B
Unregistered
posted
Thanks so much for posting- and letting us all know the other side of the story-as in "what it's like living with lyme when you don't have it."
Now I'm an old fogie with lyme-and not too easy to live with-and my husband was wondering if there was a support group for family members-there should be.
Anyway-it was somehow refreshing to hear from you. Lymies can get so focused on themselves without realizing the impact on others.
I also love your style of writing- hope to read more from you. My 17 year old daughter is sick sick sick of lyme-and she does not have it. But I do-and so does her 15 year old sister.
Thanks again-and looking forward to more-from the other side of the picture.
posted
How do I even start this without getting embarassed? I have Lyme too. Actually this only proves I have it that I wrote it like I didn't. I'm so lyme-brainy.
Thank you so much for responding though.
It may have written like I didn't have Lyme disease since I have a much higher pain tolerance and my case seems to be weirdly different from my mum and my brother's. Also I'm an emotional writer so I'm sorry if I got carried away there! I suppose it's just hard when I don't understand his azpergers side since it comes along with a boat-load of social issues. (And we're not even social!)
It felt good to rant though, I have a feeling I'll be nicer to him in the morning regardless.
Posts: 28 | From North Carolina | Registered: Jul 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Alexis,
I think you did one really good thing. You ranted here. If you rant here, you can get your emotions out and that can help.
I know it's hard enough sometimes to deal with a 12 year old brother. Have a brother myself and I got lots of dead arms on car trips.
Dealing with a brother who has Lyme ans Azbergers when you yourself have Lyme is a lot. Do you see a therapist? It may help, just to have somebody to talk to about all the pressure you are under.
I'm sure you know how to communicate with your brother. But it is important to remember that Douglas experiences the world differently than you.
Is there a way you can find to communicate to Douglas that he is upsetting you?
I know Azbergers is different than Autism, but there are also similarities. I used to babysit an autistic boy. One day he walked out of the house. I tried to explain to him how it made me feel when he left, that I was scared.
I finally said "When you do that, it makes me cry." He understood that because, although he couldn't understand the emotions scared or sad, he did understand the action of crying.
You also need to make sure you find time for yourself away from your brother. Maybe you can find some special mother/daughter activities that help both of you get some relaxation.
And don't look down on yourself. You have enough to deal with yourself fighting Lyme. It's ok to get mad or upset.
Maybe you can get some really good headphones for the next car trip?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Carol B
Unregistered
posted
My bad... Your Mom has even talked about having a daughter with Lyme-takes me a while to do the math and put 2 and 2 together. Anyway- I wish my daughter would connect with some other kids with lyme.
She is in total isolation lately, literally , on the couch-24/7 playing video games /watching TV or checking her MySpace. When I suggest Lymenet to her she looks at me like I am such a jerk. She cautions ME about how lymenet is probably more dangerous than MySpace.
What's a Mom to do- but be patient and pray-and keep trying to guide her. So I find your posting even that much more refreshing now-it gives me hope that my daughter may some day open up about how she feels in the midst of this Lyme Twilight Zone.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Dear Alexis, (lol)
I am of the opinion that you are doing an amazing job dealing with your brother all things considered. Brothers and sisters that don't even know what a herx is fight sometimes. and they don't even have a conscience about it! I don't think I encourage you enough on how you are doing with Doug.
This week should be better now that we are home rather than traveling. He has a hard time with that. Me too.
He will be more upbeat when we get settled in our new place where he has friends and be more pleasant. (If not, God will give us the strength we need to endure) Everything will be all right.
I am glad you posted, but yes, you are supposed to be off the computer and in bed at midnight!
Char (lol)
Posts: 1230 | From US | Registered: Nov 2005
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Aniek ~> I think I have lost my patience with trying to explain my emotions to him instead of leave subtle (or not so subtle) hints. I'm defintely going to start trying though, thanks for the encouragement! I currently don't have a therapist since we're in the middle of moving (there will be more road trips like this last one) but I'm hoping to get a new one. It would definitely help.
Carol ~> I vividly remember being in a stage last year where all I'd do was video games, television, computer games, anything to keep my mind somewhat active while on strong antibiotics. I've lessened up on medications and have sort of narrowed it down so I'm simply on the computer most of the day. I bet things will get loads better with your daughter; maybe on an antibiotic break? Those are always fun. (LOL.) Silver just put up a teen Lyme chat room/site and I know I've signed up.
char ~> Can I plead guilty to insomnia? You know I'm wired at night (a thousand apologies.) Thanks for putting things in perspective. Relying on God is a big thing I've got to catch up on.
Posts: 28 | From North Carolina | Registered: Jul 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Alexis, It is so good that you are posting..You will find support here..But beware..Many will have bouts of lyme rage and sometimes seem very mean..
So if it ever happens, take a step back and try to understand this disease can hurt so many people in so many different ways. ANd just like your brother, they may not mean it.
Your mom has been very supportive and compassionate to help me thru the hell we are going thru so I am sure she loves you deeply and only wants you well..
If she is like me, she would probably give up body parts to get you guys well..
I can not imagine how you can manage with all 3 of you sick..And brothers can be difficult at any age..Mine is in his 60's and a real loss to society..
You need to try to remember he is not well and may not be able to control his actions and mouth.. My daughter has recently said things to me that no mom should hear and if she were well, she would be so embarassed but she can't reason at the moment.
There is also a teen board thru the SE Pa lyme support group in Chester Co. Pa..Can't remember the address..lymepa.org, maybe..Perhaps someone will chime in and give it to you..
Good luck and I am convinced that someday everyone will be well and thru this suffering some good will come..I can not predict what it will be but the hope keeps me going..
Hugs..lymemomtooo
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... and I honestly don't like being so upset at him
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Your Mom has even talked about having a daughter with Lyme-takes me a while to do the math and put 2 and 2 together.![[Smile]](smile.gif)
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