posted
I have never posted in this section even though I have been a member for many years. I have been having a rough time lately. Me and my mom are complete opposites and we have been fighting recently. We just got into another huge fight.
I told my mom that I have been having problems remembering things, am unable to concentrate, talk loudly and excessively (without realizing it), and feel like I am on drugs. I have been feeling like this for a few weeks and its gotten to the point where its very bad and happening most of the time.
I started feeling like this for the first time in 2006 and have dealt with it for years. Last October I was put on IV Levaquin and this problem stopped. When I told me mom this earlier she told me to talk quieter repeatably. I tried telling her I wasn't aware and she said that it did not make since. She said my brain seems fine and its not the Lyme. She also told me to make myself focus because I wasn't trying. Obviously this was a slap in the face because I have to try even to focus on a soap opera.
Before I was diagnosed I had this same problem and she used to tell me how my problem was caused by living by myself and I was driving her crazy. I knew something was really wrong with me then also. I tried to explain to her that I do try to focus and I can not. She thinks I am lying to her for some reason and if I just try harder or do brain exercises everything will improve.
She keeps telling me that she can help me like its so easily fixed and if I want to change I would. She told me she can't even watch tv without me constantly interrupting her and it must be some new medication. I haven't started any new medications, I wish that I had, and I told her that.
I am really upset and do not know what to do. I hate fighting with her and have been crying for a while now. I do not see how the one person who seemed to understand this disease the most can be so quick to dismiss it. She told me I should trust her and that because I do not sound confused so I am not confused.
That is so hurtful. I hate talking loud and not being able to sit still long enough to watch a tv show. I feel like I have bugs under my skin and cannot focus on anything because my brain just wants to scream. I wish that even though I feel awful I could shut up.
I understand that most people think somebody who is sick should be quiet but I literally cannot stop talking. Sorry for going on and on but this is really hard on me. I have been disabled for 5 years but sick since 1994. Would love some support.
Thanks for listening,
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
My mother would sort of listen. Then she would make facial expressions as if she was in great pain.
Then finally, no lie, would come the words that would instantly lift my spirits, heal my body, etc
" Why don't you take a shower, comb your hair AND put on a little lipstick. You will feel so much better."
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Oh i am so sorry. Hugs.
I do not have a mother, so i dont really know the dynamics of that , other than i am a mom.
it sounds like maybe she is frustrated or in denial even? I saod this in another thread, but for most sick people, they either get better or they die. There is no real lingering in the middle forevet. At least thats what i think. So for some people it must be hard to understand why we never get better..
I dont really have any good advice, but wanted you to know you are not alone.
Posts: 3905 | From USA | Registered: May 2007
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
LuLu, they just don't get it. And probably never will. My family sucked the big one when it came to understanding and helping. Just take care of yourself.
Something that helped me too was realizing that I was dealing with a terrible disease practically on my own. Over the years it's helped me to be very compassionate towards myself and proud that I can accomplish things with such a debilitating illness.
Hang in there and don't give up on yourself!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Right after this post, my dad made a snide comment to my 9 year old. I dont really know the context, but i guess he said something like " where is your mother, in bed as usual?"
Yes in the last 4 years i spent most of it in bed. But now i have no choice. Its potentially life and death now for my baby. What am i supposed to do?
Yes they watch my kids alot. If you are tired of it i need to know in advance so i can prepare. Thats all. Oh and i had someone on the way to take over.
Its not like i can just run around.... sigh..
Posts: 3905 | From USA | Registered: May 2007
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Even moms drop the ball...I think people that make snarky comments were to ever experience Lyme first hand would probably be mortified that they acted in such a way and said such things...but that is just the problem...caretakers do not know how it is for someone suffering from Lyme.
We can ask questions, we can REALLY listen, we can love you till the cows come home, but nothing will change the fact that we are not in your shoes.
The whole enchilada is frustrating...for the person who is ill to the person who is trying to help the person who is ill.
I am not excusing rude comments...that is not acceptable in any circumstance...but there is another side to the story. Some caretakers/loved ones are just naturally more compassionate than others...some are better problem solvers, and some are at a loss of what to do at all...some have patience and some have short fuses.
I think that it is a common thing, that if you aren't well within the time-frame that one thinks you should be, then things start to break down. Even though it isn't rational, I know that sometimes people wonder why you can't pull yourself up by your boot straps and just move on...not understanding that that isn't possible.
It just is plain hard for people to wrap their minds around the fact that someone can be downright sick for years...it doesn't fit into societies expectations of illness...ESPECIALLY if you have been treating that illness all along.
I am sorry your mom and you are at odds...but you did say you are opposites...maybe you can reconcile yourself to that fact somehow. Your mom loves you...she is just frustrated (not to take away from the fact that you are also).
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Lulu.. I'm so sorry you can't get thru to your mom about this. I have similar symptoms in that I can't concentrate on drama type shows and if I'm watching with my husband, I interrupt with my comments. (not welcome!!)
And I must admit to talking too loudly at times. Sigh.
Trying to focus and not being able to is certainly NOT YOUR FAULT. None of the brain involvement is YOUR fault.
Maybe you could find an article about Lyme affecting the brain and show it to her??
Does she live with you?? or vice versa??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
The brain stuff is HORRIBLE! I stutter, tremble, can't remember what you said 10 seconds ago, can't handle phone calls, etc.
But the GOOD NEWS is that it is getting better!! The big difference came when I switched to flagyl/ketek from the Bicillin shots. And, yes, I too had IV vancomycin for awhile. But my LLMD, a very well known one, said that flagyl ketek works very well on the brain stuff.
If you can't talk with your mom, why not write her a letter and tell her how you feel, how lonely it is to be "crazy" and not be able to do anything about it. Try to find some articles on the psychiatric symptoms of lyme disease. If all this fails, then my advice is to ignore her and find someone else to talk to....a nurse, a therapist, a priest, a volunteer. Maybe even your mom could find someone to talk with you if it is too hard for her to do.
My daughter cannot bear to be around me...it is just too painful for her. I understand and I will welcome her back when I am able to be well enough to appease her. My sons are both very supportive and are both upset with her. But I have been ill for most of her life. Her father died when she was one. So she is, rightfully, angry at losing both parents.
This is a tough disease to understand, especially when our own government denies us the support we deserve. We have to hold on to one another and to our own inner strength. Some day the news will get out about our struggles. Some day people with lyme disease will be treated fairly and with dignity. Meanwhile ignorance abounds. We must rise above it and be strong.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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