my best friend has so many sx of lyme and other things. she is acting crazy and yelling all the time.
complains constantly about her aches and pains, and last week she told me that she forgot how to use her clutch while driving for like 5 minutes! she travels for her job and drives hundreds of miles a week! I drove with her last week and she was all over the road and was stopping in the middle of the street!. she is just about out of control.
I tell her all the time she needs to be tested or start treatment. she says things like "when Im dead" , or, "all drs are frauds" (she is a nurse). I told her that she is doing her family a terrible diservice by not adressing her issues and that she will end up dead or bedridden one day and have to rely on them. she always says she has no time .
I am really getting tired of it. I am very ill first off, and have given up on all my other so called friends that have abandoned me since last year when I was dx. If I lose my best friend I will be all alone. my husband is here but has his own problems and we are struggling with an entire sick family and aging parents, no money, etc, etc....
do I just give up on everyone? I know many of you are alone. I just feel like I have nothing in common with anyone any more. all my socializing is pretty non exsistant. is this OK? should I push myslef to socialize? I feel this friend and all my old friends are so distant now.
Posted by poppy (Member # 5355) on :
A lot of us are in the boat with you and it is painful. There is only so much a person can cope with, and to know that those who might be expected to support us are not doing that. You have friends here. Not the same, I know, but something.
As far as the nurse/friend is concerned, you have done what you can. This comes up a lot on lymenet....trying to help people who won't be helped. If only the testing were more reliable and getting treatment weren't such a hassle, it might be easier to get suspected cases to consider lyme.
Posted by lymeinhell (Member # 4622) on :
If it were me, I'd email her articles about Lyme that mimic what she is going through. One at a time, when you come across something.
You can only lead a horse to water....
I've gotten 2 people treated this way. They caved and finally got checked when the pain became overwhelming. It may or may not work, but know that you've done what you can.
As far as her support or support from others, all of us here know your pain. Illness separates the aquaintances from the true friends rather quickly. And know that you can always come here.
Posted by LisaK (Member # 41384) on :
I have sent her so many info emails and so on.
I am just sad that what seemed like my one an donly real friend is starting to go nuts.
and I guess I am mourning the loss of pretty much everyone in my life.
are you all loners here?
Posted by poppy (Member # 5355) on :
I prefer the word "alone" rather than "loners," as the first is temporary and the second more describes a supposed personality type and is often misused when the correct word is the first one instead.
Posted by LisaK (Member # 41384) on :
I actually am talking about being a loner. as in "I can't find anyone that I can relate to, ever" .
to me that is resigning to being a loner.
that is how I am feeling. alone *and* a loner
Posted by desertwind (Member # 25256) on :
Yes, I can relate.
While I certainly am better then I had been in the past, I have lost a lot of "friendships" along the way. Guess they were not real friends to begin with. But still, I have a close friend who "has lyme, does not have lyme, has lyme does not have lyme". Trust me I have been there in regards to whether or not I had/have lyme but at some point you need to try SOMETHING!
My friend is not willing to see a LLMD. I even helped her to get an appointment with an LLMD but she would not go because that was one of the days when she "did not have lyme".
Many tick bites but refuses to believe TBI's might be her issue. I try to help as much as I can; gave her Dr. H.'s book, talked about different supp.'s and meds ect... I did all of this supportive friend stuff while I was very sick myself.
I got emotionally and physically tired of her coming to me about lyme but never taking the steps to treat. I backed off and just let her go....Not once did she come to my aid when I was very ill.
Sometimes I find being alone is less stressful then trying to engage in relationships at this point.
People get confused when they see me looking and acting normal but then a month later not so good. I get tired of explaining and they get tired of trying to understand.
Look, there is only so much you can do and at the end of the day you need to take care of you and your family!
Sorry you are having a rough go at it.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by LisaK: ...do I just give up on everyone? I know many of you are alone. I just feel like I have nothing in common with anyone any more. all my socializing is pretty non exsistant. is this OK? should I push myslef to socialize? I feel this friend and all my old friends are so distant now.
In a nut shell, yes. Their journey is their own. I just send my friends and family emails about lyme, and hope someday they will understand and realize they have it too. Until then, I need my rest, so the alienation is a good thing for me. Pure privacy. I never thought I'd have it, but it is nice.
It is good to get out and get some human interaction though. A lyme support group helps. Also window shopping and just being among people helps. I actually love this because no one knows my story when I'm shopping, so they are not quick to judge.
I also LOVE book stores. They are a wonderful place to be with others. For the most part, I've stopped buying books on amazon because the bookstores are closing due to amazon, & e books etc., so if you need a book, or just want to look at them (the best part) go to a bookstore to support them, otherwise we might just lose them forever.
Posted by Judie (Member # 38323) on :
I had 2 friend's like what you described. It takes patience, not intensity in my experience.
I would bring up the issue every 3-6 months and then move on to another topic the other months.
If you pressure the friend about Lyme, she may not want to stick around.
Both of my friends eventually pursued Lyme. It took over a year for both of them and they both have it and co-infections.
Posted by Keebler (Member # 12673) on :
- Just give them the details about the local lyme support groups and which LLMDs &/or LL NDs who are ILADS educated and LL in your area.
First, find out if any might be giving a presentation somewhere soon or if they've got a paper they've written. Just give your friend this detail on paper, all neat in a nice colored large envelope, even so it's easy for them to refer back to.
If area LL doctors don't have an article, you might print out just one or two and put with the local support group phone / location / dates. -
Posted by Keebler (Member # 12673) on :
- Oh, that forgetting how to drive the car? I did that, too. At times, I'd forget how to stop so would cruise through a red light, dazed and confused (and very lucky!).
I had a stick and that might have been just part of the problem but I also doubt an automatic transmission would have helped me with all the driving dangers.
Other times, I'd see the light ahead turn a color but I did know what that meant. I knew it must mean I needed to either do -- or continue doing - something but I just couldn't think. Like I was in shock.
And I was. The kinds of shock from lyme from the toxicity and the adrenal dysfunction are very real. And that's just a simple explanation. The brain is just so overwhelmed.
I also lost my car downtown and when the "city guides" found it, I had zero idea how it got on that street. I had no memory of driving on that street.
Same thing at least twice at various shopping malls. Car would be a completely different parking lot - near an entrance to the mall I had no memory of going through. and they would be distinctive mall entries, not all generic.
Now, advice here is good that those we know whom we think maybe should investigate a possible lyme connection don't want to . . . but
in the case of driving. I do think you need to say that it's a safety matter, whatever the cause.
There are other reasons but what I describe about driving has also been described by many others as their early wake-up calls. This happened to me in the early '90's. I had not even heard of lyme at that point.
I knew I was very sick but no doctor would help. If you could say just the right thing about this driving, it might help your friend be relieved to know that it's not so strange or unheard of.
Other things that you'd not want to get into, though, other than just to suggest she check all the Rx and OTC / supplements. Especially sleeping Rx can cause the next day brain confusion. Especially ambien. Ambien has been directly linked to many auto accidents, even the next day.
She can also explore other causes of "drowsy driving" - but it's not safe to drive until this is figured out. And I'd sure not want to get in the car.
But, then, looking back, these episodes just hit out of nowhere. It's not like when you get into the car, they hit. So she may think all is okay until she is distracted by a flashing light or too much action.
The inner ear effects of lyme also contribute very much to this driving issue.
Chemical sensitivities, too. If she has one of those toxic "air fresheners" that should be the first thing to go.
Hot asphalt, summer heat . . . exhaust fume from other vehicles . . . any of this can add to the "hits" too and the poor person has no idea what just happened in their brain. -
[ 08-12-2014, 04:51 PM: Message edited by: Keebler ]
Posted by steve1906 (Member # 16206) on :
I can relate to your friend and kebbler as far as driving, it's common whit these diseases.
Just like to say, don't give up on keeping friends, or finding new frineds. We all need friends, and or family.
Sometimes its best not to discuess our diseases, unless they understand them.
Steve
Posted by LisaK (Member # 41384) on :
yes, I too have driven in strange ways prior to treatment. that was one big thing my husband noticed and said somehting about to me, which was unusual since he is not a big talker. I think if I had a clutch I would have forgotten how to use it too.
but this is only a symptom I was mentioning. I knew you would all relate. I am just sad that she won't wake up to reality and in another way it solidifies the idea I had that she never really knew or understood what I have been going through.
no outsider does. you don't get it til you get it, riight?
it is just frustrating and especially since now that I have gone through all this. makes it 100X more troubling to see someone suffering needlessly.
I do have trouble keeping my mouth shut. am working on that. my many siblings and my own kids all know that "everything" is lyme disease now. we all get a good laugh in, but truthfuly inside I have tremendous fear that all my loved ones will be lost to it.
I probably made the mistake of telling this best freind of mine mentioned here that when she ends up in bed unalbe to move I am oging to come over every day and tell her I told you so to her sick face while she lays there.
that is how mad I got at her for denying herself. yes, it may have been wrong to say that. but if she was on heroin I would say same thing. but then I have always had an issue with thinking I need to save the world.
we are best friends. been through uncountable things together. know each other like our own skin. I am sad to lose her in any respect. and especially since all my other more superficial friends are pretty much ignoring me.
Posted by poppy (Member # 5355) on :
It may also be that she does know what you have been going thru and is afraid of that for herself. Denial, in other words. Hoping that if she ignores it, it will just go away. Too bad it doesn't work that way.
Posted by Catgirl (Member # 31149) on :
Poppy is right about denial. My family is in total denial (I see the symptoms in them). Face it, no one wants to be in our boat. They have no idea what they are in for ignoring it though. I just tell myself it's their journey.
Watching them deteriorate is hard. I've learned to let go though, as they just think I'm projecting (so sad). The emails on lyme are all I can do without driving my family further away. So phone calls cover everything but lyme. It's their journey.
Posted by beaches (Member # 38251) on :
I relate to this so much. I have a wonderful friend who's been my bestie for almost 20 years.
She is dx'ed with fibro and MS. She has been to Mayo a few times and tells me how great that facility is. Yet, she is no better. So really, how great is Mayo? That's what I want to ask her.
She suffers daily from so many symptoms. She has white lesions on her brain. She is now under the care of an MS specialist.
Years back I told her I thought she had Lyme based on her symptoms and history of being in endemic areas. I begged her to be evaluated. She told me she's been tested and she's negative. I explained how problematic the testing is, but it fell on deaf ears.
She is fully aware of everything my kids and I have been through and sings my praises all the time. She always tells our friends and families how much she admires me and how much she's learned from me. That's great. But how come she's missing the most important message I've told her?
I feel terrible that she is enduring so much. But there really isn't much more I can do. My plan is that if she God-forbid becomes worse or needs a wheelchair, I will insist to her and her hubby that it's time to switch gears and take my advice and get to a LLMD.
Posted by LisaK (Member # 41384) on :
quote:Originally posted by beaches: My plan is that if she God-forbid becomes worse or needs a wheelchair, I will insist to her and her hubby that it's time to switch gears and take my advice and get to a LLMD.
I think of this too sometimes, but will I have the strength to speak up at that point? and will they even listen then?
I have told myself that I will demand autopsies when they all die and rub the + results in the rest of everyone's faces.
yes, I am quite bitter right now. sorry. having a heck of a week.
Posted by LisaK (Member # 41384) on :
I think I am mad at everyone. maybe it is best to stay away from people for now.
?????
I think part of the reality is that no one except my husband and 2 of the kids have actually seen the real case I have against lyme and the importance of early detection.
none of the people outside of our home actually saw me sitting in a catatonic state or talking like I had brain damage or unable to walk to the mailbox.
I hid that from everyone. maybe I should have not. who knows. but who wants to get dressed or comb their hair when they feel like they reverted decades or lost 100 IQ points?
this is depressing. I am depressed.
Posted by beaches (Member # 38251) on :
I think we NEED to have the strength should things take a turn for the worse for our friends. The worst that could happen is that they'll dismiss us.
The best that could happen is that they'll take our advice. Regardless of outcome, a BFF has to appreciate her friend's heart in trying to do what she feels is the right thing.
I am not beyond conning my BFF into getting her to an LLMD. I have my ways
I get what you are saying about autopsies. I am so not there.
Sorry you are having a hard week. Hope it gets better fast.
Posted by LisaK (Member # 41384) on :
yes Beaches, I agree- fight for what's right. be that friend that makes your bestie get something done because you care that much!
I have many regrets. I don't want people dying from tick disease to be one of them because I didn't do enough.
I wish I had millions. I would take her and my mom and anyone else I could on a little road trip to my dr an dnot tell them til they are there and have them tested. that is a little dream fantasy I have, haha
Posted by Judie (Member # 38323) on :
"It may also be that she does know what you have been going thru and is afraid of that for herself."
Agreed. I had a friend snap at me once for even suggesting that she could have MCS or Lyme.
Some friends definitely have this attitude that what I have, no one else can get. It's like they believe they're immune or something.
A friend's mom has CFS and fibro. I one time suggested Lyme when he told me his mom is mixing up her pills and can't remember what to take at the right time (like taking a sleeping pill in the morning).
He said something like, "Oh yeah, she was diagnosed with Lyme a long time ago once." I asked if she did antibiotics and it didn't seem like she treated at all. He had this attitude like that was in the past, no way could it be causing this.
Deaf ears. Deaf ears...no one wants to hear about Lyme!
Posted by beaches (Member # 38251) on :
I have come to the conclusion that there is only so much I can do. And, I have done my best.
I think we are all good friends/relatives just looking out for those we love.
We have to "let go" of what we would like our friends/relatives to do in terms of getting evaluated.
Sometimes the only thing left to do is to just be there for them if and when we are needed. That is what I will do for my BFF. She has always been there for me and my kids.
I owe it to her to be there however and in whatever capacity she needs me. That's how close we are.
I've had so many "friends" opt out of my life. My BFF has experienced the same. Opting out of each other's lives is not an option for either of us.
Posted by LisaK (Member # 41384) on :
I think that hurts and scares me the most- that she was always my rock.
now she just compains and complains about her pains, her job and her screwed up family. she had been working so much because her husband doesn't.
it even crossed my mind that people don't want to accept our illness because they are jealous of the attention we MIGHT be getting? could that be possible?????
I just have no explaination why everyone would stay away and not pop in to say hi. are they thinking they will be bothering me? intruding??
I am at a loss. I am actually mad at everyone for ignoring me.
Posted by MannaMe (Member # 33330) on :
Lisa, just wanted to send you a hug!
We miss our friends too, but then on the other hand, when they all want to believe its depression and not Lyme.......... we'd rather they do stay away!
We have slowly picked up a few other friends who accept us as we are.
Posted by Catgirl (Member # 31149) on :
My guess is they probably can't relate or believe what you're telling them, so they stay away. They may also fear it (denial).
People are stuck in their own reality. You cannot force anyone to see things your way whether it's about politics or religion or lyme.
Lyme is so far fetched for people because of the controversy. They simply cannot or will not wrap their heads around it (fear).
My family thinks I'm obsessed with lyme. Little do they know there is a silent epidemic right under their noses. There is nothing I can do about this other than send them info and be there for them when they figure it out.
Posted by LisaK (Member # 41384) on :
you are all right. thanks everyone. I am grateful for this place.
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