LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so now all my friends are pretty much gone. to busy for freindships so they say. how can anyone be an island? I asked me used-to-be best friend if she has ever thought about when/if her husband dies and she;s 80 years old and has not one friend in this world what the hell is she going to do??? how can anyone live like that????!!!!!!!!!!
my husband is the same way.
he does not care if he has any friends.
not sure these people realize wither how depressed they are or why don't they go and live in a cave then. !!
of course I have the now and then family member that asks how I am but that is not enough for me.
and now its valentiems day and my husband was a complete ass last night at his mom's birthday dinner as he got so tanked that he was poking me with his finger in my back and kicking me under the table and tellig me to "zip it" all night. of course no one stood up for ME. poor thing is grieving his dead father, but that is no reason to treat others poorly , is it??????
he wakes today and remembers nothing so he's fine with himself and even though he also hurt our daughter becasue he kept talking negative talk about hispanics when our daughter is presently in love with one.
im also sad that my kids are pretty much having to raise them selves an dcome to me with problems and I cannot find the brain power or strength to really help them much at all. this makes me so sad, but they get mad at me becasue they think I can help it and don't understand.
my husband told me the other day to quit all my meds because they are not doign anythign and I feel like crap all the time. I told him I am afraid that all my anxiety will come back or that I won't be able to function again daily and he said
it's "mind over matter"
well.
how can genetics be somethig you can just will away with your mind?????? excues me but that is idiotic thinking.
ive had my genetics tested and its right there- anxiety.
i have a headache- not even just a headache, it is terrible pain and nausea al lthe time and gotten worse over this past week. now it is almost all day long and night.
do I go to another dr and ask for tests on my brain now???? do I jsut put it down on my list of symptoms to deal with as something that just is what it is????
everything I eat makes me feel sicker. I am afraid to eat.
and no one cares. I am sitting here crying alone and even the dog has now abandoned me. she wont even come to me when I cal her.
am I going crazy?
is the rest of the world nuts?
can I just die now please?
when will it be a good day again? I need many of them.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Sending you hugs and know that painful abandonment of family and friends.
Wishing you comfort. Times like that you gotta try to be your own advocate. Your own best friend so to speak.
We're so in survival mode with this disease and it's made so much worse by lack of understanding. When I started treatment years ago I read a book by Connie Strasheim "The Lyme Survival Guide".
In the book the author talks about how no matter how hard you try to explain the suffering that Lyme disease causes you, unless your friends/family have Lyme too, they just won't get it. They may grasp aspects but unless they jump in your body they just won't. They get occupied by their own problems, and empathy for many can be in short supply.
That hurts. No way around it. Especially when the people we most expect or want to be there for us aren't there to help us through the agony.
The book brought up a couple of good points for me. Including: - Recall the kind words/actions & good times of & with these friends and family. "Even if they're forgetting about us now, the fact that they did anything kind at all shows that they care - even if their capacity to give has been limited by their humanity."
- (this one's harder) "Try seeing your illness from their perspective... Imagine, for example, how frustrating it must be to have to repeat the same story six times because the person you are telling it to either can't remember the details or wasn't listening to you."
Or how difficult to live with a person suffering from bouts of depression, someone physically, mentally and emotionally exhausted all the time. How baffling it is that you aren't able to work or walk or carry on a conversation.
- "For the sake of your health, for the sake of learning how to give & receive love, let go of the idea that others should understand your suffering. They can't. They never will, just as sure as we can never climb into another person's soul & see their heart up close. It doesn't mean they don't love you. They are simply human."
Good rest, nutrition and self care are not a panacea – they are critical in helping us regain emotional balance as well as the physical.
For Lyme, we have to also be super vigilant about supplementation/protocol and monitoring our symptoms because our bodies demand it 24/7. So don't give up on that part! (Per your husband's suggestion - remember he's not your doctor)
It's a constant battle and it's exhausting. But you are not alone. All the best to you and hope you find some relief.
PS - my dog runs away when I cry too! She gets weirded out because I'm 'different'. I now just come to her afterwards with a treat and love, telling her it's okay. She responds to that approach with tail wags and reciprocated love!
Posts: 114 | From California | Registered: Jan 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Sending you hugs and comfort. Sending you hope for valid, hopeless feelings.
Posts: 1431 | From USA | Registered: Mar 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
And I'm not saying the situation is hopeless. I am saying your feelings are valid. I hope you have a better day
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks Blymey. that is helpful.
and
me. thanks
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
LisaK, I understand your pain. My family didn't believe me for about 8 years.
I kept getting misdiagnosed, would have some treatment for the misdiagnoses, and kept getting sicker. From their perspective, I was a hypochondriac because I was getting "treatment" for my "diagnoses" but kept deteriorating. It wasn't until I got even sicker and it effected me more ( although before the "more," I was sick enough), that they believed/believe I'm sick.
I lost several friends bc I have been trying to get well. As you know, that requires major lifestyle changes.
To say this is terrible, every little and big aspect of Lyme and cos, is a gross understatement.
Know that even though you feel alone, as I have felt and feel many times, you are not alone. What has been comforting to me is connecting with people on lymenet who "get it." Someone once posted "you don't get it 'til you get it." I've developed a few close friendships with people on here whom I communicate with regularly.
You can always pm me. I get it. I've been beyond hopeless before and thought I'd never get well. I've made a lot of progress, but I have a good way to go. There is always hope, even when you feel from the deepest depths of your heart that it is hopeless. Keep fighting.
Posts: 1431 | From USA | Registered: Mar 2015
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
lisa , im sorry. i know. i really do. but i dont have the answer. you are making me feel better that i divorced my hubs when he didnt get it. but it was more than that. he didnt get it but i was the bread winner. so i was working sick...trying to stay on top of all the tick bites so the kids didnt get sick too
now they all think im crazy...no thanks from kids who i am sure would not have gotten their college degrees and good jobs without what i did
and the one kid that isnt doing well i am sure it is because of undertreated lyme and mold...its textbook...but he is so in denial he may never have a life after all i did to keep him healthy and all he did to get thru school
i lost my only friend in the last few weeks because i physically couldnt do something she wanted
and i have to not ask neighors for help unless it is life threatening cuz they are so worn out from me
i am starting to sell stuff that is important to me and really tryiing to set up house so i can take care of my self from bed and wc
really simplyfying so there is money to pay for help
never thought i would be here
we are so different...you with all of them still around but not understanding or helpful
me having to accept they are gone
you and i are both alone...that is the same i guess. im just trying to really simplify so i can survive
as hard as it is to be alone i am glad i dont have ppl around who dont get it and worse treat you bad for being sick
im so sorry i dont know what you can do. for me its easier all alone than fighting all the time.
but i just wish i could help you but i cant find words. many of us are going thru this
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
lisa...wow...that is a lot to deal with.
Posts: 559 | From Lyme Land | Registered: Oct 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I know its hard for many to live this way. sick and alone
that makes me very sad too.
sometimes you just need to say it out loud and hear an 'aw, you poor thing' from someone.
thanks to all those that can say 'aw'.
growing up my mom would never say aw. she is one that if you tell her your woes she would find some snappy response like, " think of the starving people" or "that's too expensive" or what ever.
all i wanted was "aw, sorry things aren't going your way" or something, but I always got some lecture.
I see this in many people today. we all have heard before- "there's so-in-so, I'm going to avoid them because all they do is complain about their health"... WELL... maybe that so-in-so NEEDS a hug today or NEEDS to hear those 2 little words: "I care". ?????
it's time to stop avoiding people because it makes us uncomfortable, and start realizing that is why we are all here! to love each other and share our lives.
that is how I see it anyway.
and it really stinks to feel alone. I don't care who you are and how much of a rock or island you think you are.
I feel a bit better today beacuse my husband and I talked a little about how I am feeling last night. but I have a long way to go until I really feel loved or appreciated. maybe I just expect too much.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry! I've tried several times to reply and haven't been able to. It's MY problem, not yours. I don't think I've ever felt "lonely" even when alone, so I just can't relate to the situation, and after reading about what you all are going through, I am very thankful I can't.
Wish SO MUCH it was the same for you too!
Wish I had some tricks in my basket to share, or healing words of wisdom, but those words fail me now. I can only kick myself for not having GOOD answers while watching and feeling you hurting.
But, I DO care! I hurt when you do, for whatever reason.
I will send everyone a BIG HUG and lots of love, and keep you in my prayers.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
My response above sucks. Except for the fact I do care and am sending hugs, love and prayers your way.
Guess I want to say- HOW can we fix the problem?
Blymie had some good suggestions. Nice post. Have you tried reading that book?
Me (her, not me) wants to be friends with you too and made a very kind offer that would be a good start to moving forward. I had my cousin to chat with every day for years- till she died. And because we were both so ill, we used the phone, which was as good or better for us than trying to meet in person.
Kayak, who has been through more than anyone should have, said.. "as hard as it is to be alone i am glad i dont have ppl around who dont get it and worse treat you bad for being sick."
She is absolutely right. That helps! Not much more miserable than being around people who don't know, will never know and worse yet, don't care.
Would a good therapist help? Listening to music a couple of hours a day? Maybe joining an online group- far removed from Lyme and health stuff- that likes what you do- like hobbies of yours, collections, etc?
My kids would come home after school, with me in bed all day, (this went on for years) and plop down on the end of the bed- getting a snack and drink in the process- and we would talk about their day, make plans for the next day and get some homework done.
Then I'd ask what they wanted for supper and give them things to do (within their limits) to get it ready. During that time I felt inadequate and as if they would suffer because of me and my lack of ability- when they really learned to be more self-sufficient and were happier for it.
I'll never forget the day one of them called home from college and was so excited because none of his 3 room mates could cook an egg much less a meal, or even do their own laundry. He had just hooked up their washer and dryer- making him look like a mechanical genius.
It took years for me to see I didn't damage them in the process of me being ill, but when I did see it, and still do today, it feels good.
Hoping the above will serve to bring you up a notch and let you know you can be productive and useful and a friend even though it doesn't seem like it right now.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
your response didn't suck tincup!!!!
thank you very much . what you said helped very much
everyone has helped me in their response.
I am feeling much better this week.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Whew! I am so glad you are feeling better! Must have been the prayers.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I did stop taking a lot of my medications. I just couldn't take it any more- and it seems it may have been something in that really messing me up maybe as a lot of my head pain has gone
BUT it could also have been a wave of sx and will com back regardless.... who knows for sure. i will have to figure that all out i guess.
all i know is that when i don't have as much pain in my head and other places i feel much better emotionally. the days (and nights) aren't as dark and horrible.
PLUS:::: I started writing in my journal again and that has helped to see it written out in front of me, by my own hand so i can see my feelings
also.... that has helped me to get over it a bit more and better about the 2 people i thought were my best friends and had no time for me. sure it was a loss, but I have told myself it is OK for me to not be the one that holds the relationship all together! which is what ive always done with most relationships in my life. siblings included.
i mean, why should it be only one sided?? it shouldn't. and i was wearing myself thin trying to make it so.
i am still very sad and i miss the thought of how their friendship seemed to me, but knowing now that my idea of friendship is not like theirs and that it's ok to find new ones helps me along.
i know the day will come when each of them contacts me to get together. when i think about that it upsets me because i am not sure i will be able to control myslef and i might slip back into thinking they are good friends. you see, they are good in a lot of ways- like if i call them with an emergency they would help me I think, but is that all this is about??? that seems like using people, doesn't it?
I also had a long talk with my husband. we do have our tough times. this is a tough time for sure. new health issues and he got a new job that is a big big change for him and he can't handle change very easily. so we are trying to work it out.
most of all PRAYER sure does work!!!! and thank you for theprayers. God is so good.
this is a long one- haha! i hope someone read til the end
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im glad you feel a little better lisa...i posted a long thing and it got lost...im on new device ?!? too old for this stuff...take care
ps...i read it to the end
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
able to read your last post to the end.
Posts: 559 | From Lyme Land | Registered: Oct 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lisa,
Glad you are making positive steps with the situation. Good for you!
And yes, the meds (herxing/toxins) can put me in the "Nobody loves me, everybody hates me, I'm going to eat worms and die" mode. Clearing out your system is sometimes what is needed to kick that feeling. Changes your outlook totally.
I have friends I don't keep in touch with until they are needed or I have the ability to do so, or they need something. I just contacted a friend that I've had for two decades or more, and we haven't chatted, etc. for a several years. We each have our own lives and stay busy, but we are always there for each other when needed.
We caught up and got some things straight and laughed, had fun and then moved on. I know when she needs something or when I do we will comfortably reach out to each other and in the meantime we are always in each others hearts.
That friend is there for me, as you say yours would be too if you needed something. I'd hate to see you write them off because they perhaps aren't living up to your definition of a friend. In MY opinion, friends are all different and we need to take them as they come to us.
But, once a friend always a friend. Unless, of course, there is a serious problem that pops up.
My point- Please don't give up on them. They will have a hard time trying to work around your health situation (don't know how to handle it?), so maybe just let them be the kind of friend they can be for now.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I hear ya tincup... and that is what i wsa exactly thinking today as a matter of fact! but, I am not sure i need any more friends like that because all my friends seem to be that kind of friend.
I just wnat someone very close I can share everythign with. is that too much to ask? i know many people don't have this, and some dont care, and some are like me and cry over it.
i guess it just is what it is.
i'd like to go back to olden ways of when generations lived together. but, if i had to live that way maybe I wound' tlike it so much! ha.
anyway, thanks everyone for caring.
im glad i have lymenet friends.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"i'd like to go back to olden ways of when generations lived together. but, if i had to live that way maybe I wound' tlike it so much! ha."
My guess is that would get old after a while. It wouldn't take long for me to feel that way, for sure.
You said.. "I just want someone very close I can share everythign with."
I understand what you are saying, more so now than before. I am sorry you are missing that. I do hope you find a close friend soon. Till then, keep writing. OK?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks tincup.
I was thinking last night this:
these 2 'best' friends of mine .... they never really request to see me. and they never call very often, DESPITE my requests to do so. I don't bug them. I only ask to visit like every few months or so and that generally never happens. becasue they at just too busy.....
and they both have told me more than just a few times that I am their only real friend. so it's not that they don't like me. they call me their best friend.
but im tired of being best friends to people that put no effort into it. neither have come to visit me when I wsa knocking on deaths door. not that i told them i was dying (when I felt i was), but they both knew i was very ill.
why do i want people like that ?? am I stupid?? too nice?? needy??
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
kayak and rosie, thanks for taking the time to read my post!
kayak, I have done the same thing- lost long messages..... o well. i know your intention is always good!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
another bad day.
another dr tells me there is nothing wrong with me and to stop all my supplements.
this was an endocrine dr.
I give up.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
LisaK, There is nothing wrong with you, after all, we all know there is no such thing as chronic lyme disease - Are you laughing?
A smile is the cooling system for the brain and the lighting system for the face as well as the healing system of the heart. Keep smiling!
With five seconds of smiling, you make a photograph immensely more beautiful. Just imagine how beautiful your life would be if you just kept smiling all the time.
Life offers many paths, but some may lead you astray. During this sad time, remember that we are here for you, just a keyboard away.
Now we need a smile from you -
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Nothing...absolutely nothing else can bring a person to such despair, than a dismissive doctor.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
steve! haha. that made me smile. I have been trying to make an effort to really keep smiling and pass that smile onto other people. it is hard, but I do catch myself and restart that curling of the lips when I find my self in a scowl or frown. it does make a difference for yourself and for others.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
momindeep- YES! UGH.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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