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Posted 10/22/2011 9:52 PM (GMT 0)
i knew i had this for years and for some strange reason i thought that once i was validated that i would be allowed to heal in "my way"......but my friends and family that told me repeatedly that i didnt have lyme and that i was a hypochondriac....have decided to no longer be apart of my life once i had test results to prove what i had....and the ones who havent left me...are still acting like i should just be able to go and do anyways.....im sooo tired....lonely...frustrated...and hearing constantly..."well why cant u?"...i have to explain myself over and over how tired i am and the intense pain in my muscles.....i just dont know what to do.....my seven yr old wants to go play all the time....my 19 yr old daughter wants to go shopping.....and wanting me to do her hair....my mother in law wants me to cut her hair and give her manicures.....and my husband just this morning said to me..."well since ur not in school anymore why dont u get a job"...i almost cried...and i explained to him that school was very important to me and that if i cant do school right now....what makes u think i can do a job?"....i am very angry right now....i wanna scream....
Posted 10/22/2011 10:34 PM (GMT 0)
Awww, Brokenangel! I am sooo sorry to hear of your situation! It's hard enough living with these infections, but when those that you love so much (and have to be around daily) don't get it, it makes it even harder!

Of course you are allowed to vent here! We really do understand what you are trying so hard to live with! We also understand just how impossible things can feel sometimes when you get overwhelmed! Hang in there!!! And some big
(((hugs)))) (((hugs))) (((hugs)))!!

Why don't you try printing out "The Spoon Theory" for them to read? You can find it always in the "New to Lyme?" thread, but here is a direct link to it: www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

This was written by a college gal who suffers from Lupus, but the exhaustion we experience is on the same level I think.

Another thing you could do is arrange to have a 'family movie night' and be sure that "Under Our Skin" is on the absolutely must see list! There are several different sites online that have this movie that also offer free trials, or if you already use Netflix or Hulu just set it up there!

Something to keep in mind is if you can get through this first bit, then you will be feeling better and it won't be such a struggle to just keep up with the day-to-day family stuff.

One thing I know, the friends that I've lost weren't really friends that I needed in my life. I sure didn't need any more negativity in my life! I've been pretty fortunate with my close family members, but it was a battle that was hard fought. I had to ignore the negatives that they said to me while pursuing treatment - but they came around as I started to heal. Back when I was a newbie on this site though, it was pretty rough. My hubby once said to me -in a very candid moment- "It's hard to remember you're sick because you look so good!" Ouch! I still have 2 sons that don't want to know anything about Lyme or any other TBI or what's happening to me - not even the healing I have managed to gain! So do everything you can to just hang on while your family adjusts.


I'm sure that others will be here to suggest more ways for you to get through this as well.
Posted 10/22/2011 10:38 PM (GMT 0)
I think you should scream. Either when you're alone or into a pillow...I find that surprisingly helpful. That or force yourself to have a good cry...it'll even get some of the toxins out!

What you're going through right now is one of the worst things about having Lyme. No one gets it and I don't think they can. You shouldn't have to explain yourself. No one would expect someone with the flu to explain why they can't do anything. With chronic illness we learn to do things while sick even though when most people get sick temporarily they just stop and rest. It really isn't fair. I think all you can really do is try to accept the crummy situation you're in and that it's going to be frustrating and even those who try to understand still can't. Being called a hypochondriac is the worst...I've been there. I've lost so many people to this disease and I know how infuriating it is. Just know that people here understand you, and why you can't work and all of that. Hang in there.
Posted 10/22/2011 11:45 PM (GMT 0)
I agree. I think you should scream. I used to scream songs in the car. Songs about hate and rage and friends that leave you. Truthfully it was good therapy. I remember saying to my husband, I don't think you get it, something is very wrong with me. I tried keeping it to myself until it got to the point where I couldn't keep up with the house or kids or work. I felt like a failure but used it as a means to forge ahead, determined to find out what was wrong with me. Then when I did, I was thrilled. Until I got so depressed that I didn't think I had the fight in me anymore. So I made the necessary lifestyle changes, avoiding those that didn't understand and caused me more stress. I learned to love my couch and relaxing and just concentrating on getting well. If I couldn't make dinner, I didn't. If I needed a nap every day, I took one. and lo and behold i started to turn the corner.

I just read somewhere (it may have been on this board) a quote "You won't get it unless you get it and I hope you never do." Pretty much sums up lyme in a sentence. I truly hope it gets easier for you.
Posted 10/23/2011 1:07 AM (GMT 0)
Hey, I just posted a response to a similar post in the thread "The pain of losing people in your life." Here goes...

I haven't posted in several months, but I've been around on HW for a while...add me to the list of friend/family casualties, but I have learned from it!

I've told my story before because this topic has come up a number of times since I've joined, so I won't go into all the details again, but I think the thing we have to remember is that everyone has problems of their own and somehow we are expecting other people to be there for us like we have cancer or were involved in a bad car accident or something. I learned this lesson the hard way with an unrelated serious "invisible" illness starting when I was 17 and through my early 30's. It was truly devastating. BUT I learned so much about human nature at a very early age -- this started 30 years ago for me. Then, when I got Lyme and had no idea what was wrong with me for 4 years before being diagnosed, somehow I thought the people close to me would at least be interested in hearing what was wrong with me, but again I was wrong. And trust me, I am NOT a person to talk about health issues very much at all, so it was not like I was always talking about it. Then I found something on-line that really made sense. I wish I could quote it, but this is from memory: people can only deal with someone else's problems for a very short period of time, even cancer has about a four month max. That really makes sense when you think about the problems in for example your sibling's life or a friend's life -- we EACH have our own problems, responsibilities, issues, etc. to deal with. We reach out to our ability, but I certainly do not dwell on anyone else's issues for very long because I have my own life to contend with - which includes children/family, parents/extended family, work, church, friends, personal interests - I only have so much time/emotion for each area.

I again was hurt a year ago when my 39 yr old sister died completely unexpectedly. We were very close and she was one of my best friends, so this was a huge loss in my life. Close friends were certainly aware of it, but when I broke down crying on the 3 month anniversary, a couple of them clearly let me know it was time to keep it to myself; that I should be used to it by now and they didn't want to hear about it -- and I rarely talked about it to that point! One insinuated that it was the same as the loss of her 83 yr old mother who had been in a nursing home for a number of years. Seriously? An old person who has lived a full life, was in ill health for years, and was not active part of her day to day life was the same as a person who's life was cut short (less than half of her mother's lifetime), who was a very active person in my day-to-day life, and was so full of life? And I say this even less than 2 months after the death of my father who had been quite ill and lived a full life. As I cried and felt sorry for myself as I was grieving, I again remembered the 4 month max, and instead of holding onto the hurt, I just tried to look around at all the people in my life and what they are going through, and guess what? I had clearly forgotten about some of their issues, was not interested in some others, and felt I had given enough of myself to yet some others. So yes, it would be great if those around us were 100% tuned in to our needs, but that is an impossible dream. People just cannot be expected to carry around anyone else's emotional or health issues because we each carry around our own.

I hope this helps someone else to let go of the hurt and grow from the knowledge.
Posted 10/23/2011 1:20 AM (GMT 0)
And something else I just thought of...also, when something tragic happens -- like the diagnosis of fatal cancer or a car accident or a heart attack or a fire or whatever, people want to immediately reach out and do what they are capable of doing to help partly because they feel they are somehow involved in this huge thing. They get to be a part of this horrible thing that has happened that everyone is talking about, and it makes them feel good about themselves for helping and telling others about the tragedy and what they did to help. If you think that is harsh or not true, the next time something like that happens honestly look at your own reasons for reaching out...
Posted 10/23/2011 1:37 AM (GMT 0)
between the herxing...my whole body manifesting symptoms at the same time...even new ones...im weak...and just plain sad.....and excited all at the same time...i felt like the world had been lifted off my shoulders when i was validated after 15 plus yrs of suffereing....doctors were mean to me...called me crazy....close family called me names...and started distancing theirselves...wouldnt answer the phone when i called them...i have three sisters that are RN's and not one since i have been diagnosed have called me...or offer to help me in anyway...its been close to a month since diagnosis...and my bestfriend and my sisters have "kicked me to the curb...and i had my husband left for support and he wanted to know why i wasnt getting a job....i feel totallt alone.....but i know theres a higher power at work here.....lyme has taken almost everthing from me...EXCEPT MY WILL TO CARRY ON.....and i know i will carry on...but i too have also learned a thing or two about human nature....u dont offend people when u think outside the box...u offend people when u think outside THEIR box......and truly my only support is a friend i acquired through this disease...and u guys...i dont know what i would do if this forum didnt exist......i still have hope and love in my heart for those who have chosen to leave me at my time of need.....and im being intentional not to be hard hearted....cause there will be a time when those people need me.....and it took lyme to help me figure out its all about choices...and i choose this day not to let others bring me down.....and even though i am makeing decisions that will benefit my healing...it doesnt make it hurt any less.....i know i will be ok...and that im just making room for true friends to enter into my life...i just wish they were here now......it would make my journey alot easier just knowing someone i had "invested" in could give me some return on the true friend i had been for years......but yadayadayada...im alive....and returning back to health...and i will conquer those who have hurt me....i will conquer lyme...and i will conquer my myself on not carrying grudges...because..when i finally win....its gonna be one heck of a testimony
Posted 10/23/2011 1:43 AM (GMT 0)
and tala 3 it looks like u study peoples behavior around u and u "take in" and learn what u can...i too "study"...and its hard sometimes not to be hopeless.....and even though u can find someone to help u wit ur journey...we are all still alone...alone with our choices....we are our own "kingdom"....and this lyme has also help me figure out that the most IMPORTANT RELATIONSHIP WE WILL EVER KNOW IS WITH OURSELVES...and here lately i have definately figured out alot about myself....which will be one of my greatest accomplishments
Posted 10/23/2011 12:30 PM (GMT 0)
Hang in there sweetie.....believe me when I say I have been where you are. My so called "best friend" didn't come see me once the entire time I was out of work. When I started back to work she acted like nothing was wrong with me and NEVER asks me how I am feeling. It really got to me for quite some time, but I just put it on the back burner and let it go or it will consume me. You know that I am here for you anytime you need me and am just a phone call away. BTW.....my doctors appt is tuesday and should hopefully be able to go back to my regular job.....so wish me luck!! :)
Posted 10/23/2011 3:22 PM (GMT 0)
I've never really voiced this before, but I too have lost every single "friend" I had - each time I became more ill. I am now down to the only two that have been there for me in every single way possible - my hubby and my daughter - and they have stuck by me a very long time! My daughter has never known me to be well, and neither has my hubby - but there were two so-called husband before him that just couldn't take it. Since I have been ill for most of my life- it's not like the relationship ended because I got ill - I already was.

This wonderful man that I now have the privilege to call my hubby - well he has stuck by my side, supporting me as completely as is humanly possible when they haven't experienced the same kind - or the same severity of issues as I have.

So I don't think that the 4 month rule is accurate either. I believe that maybe you, Tala, and others here - like me- have been very unfortunate in the friends that you had - they obviously didn't have the stomach, the compassion, or were able look outside their selves enough to be a friend to someone who was ill. It's not like we want to go everywhere and do everything they want to do! We just need a friend.

I do agree that we must be careful to talk about things other than our illness with others - it doesn't matter who you are - if you don't have the same interest in any subject, when one person just goes on and on and on about that subject...well the other person gets bored. This is a huge reason in my mind as to why we need to have other little 'hobbies' going. Don't have one? Find one! There are a ton of things that a person can do - even when they don't have hardly any energy. Put together a puzzle, learn to knit/crochet, read a book, sew a dress/blouse (or better yet, lounge pants! LOL!) , learn how to play checkers/chess, do crosswords/sodokus ...the list goes on.

This is neither a smooth or easy road to travel - and the longer you have been ill the harder the road is to travel - I know. Although this doesn't mean our lives are over by any means! This time we get to re-invent ourselves!!! We have the knowledge and the ability to switch any thing we want to about ourselves (except being ill and a few other choice things), but as for 'who' we are? Don't like the job you had? If you are too ill to work, then this might be the perfect opportunity to go back to school! There are a ton of online schools now!

So we have to almost literally pick ourselves up by our boot straps -but, we can do that!!! We have to want to have a life - and there's no reason not too. If you are unhappy with the way things are going, take a different path! Don't count on others to make you happy - find things that can add happiness to your life. Grow a few flowers/herbs - they can be grown indoors! It's amazing to me how many people really like to grow a 'little something' - even if it is in their kitchen window!

Oops, really long post - continued in next post....
Posted 10/23/2011 3:24 PM (GMT 0)
With all of that having been said - PLEASE, please, please, if you begin to feel desperate call someone!! There really are people out there that want to talk to you if things get too desperate for you!!! Here are a few numbers -

1-800-SUICIDE (1-800-784-2433)

This is a combined network of the Amerian Association of Suicidology, the National Hopeline Network, CONTACT USA, and many other organizations. Call are automatically routed to the nearest crisis center to the phone from which the call for help is placed.

Here are some other numbers as well though:


NDMDA Depression Hotline | Support Group. 800-826-3632

Suicide Prevention Services Crisis Hotline 800-784-2433

Suicide Prevention Services Depression Hotline 630-482-9696

AAA Crisis Pregnancy Center 800-560-0717

Child Abuse Hotline | Support & Information 800-792-5200

Crisis Help Line | For Any Kind of Crisis 800-233-4357

Domestic & Teen Dating Violence | English & Spanish 800-992-2600

Parental Stress Hotline | Help for Parents 800-632-8188

Runaway Hotline | All Calls are Confidential 800-231-6946

Sexual Assault Hotline | Up 24/7 - In English & Spanish 800-223-5001

Suicide & Depression Hotline | Covenant House 800-999-9999
Posted 10/23/2011 4:50 PM (GMT 0)
I just want to point out that I too have found my only real support and understanding from this group! My husband is great, but he really doesn't "believe" in Lyme Disease and thinks the alternative MD who diagnosed me is full of it. When I finally got my long-awaited diagnosis, I was thrilled to finally have a name to call this life-changing illness, and his response was that he didn't think I had LD. I asked him what he thought it was then, and he said he didn't know, but he very much doubted it was LD - probably because I had multiple negative Lyme tests done by "real" doctors!

No one EVER asks me how I'm doing or if I'm better. The few times I had voiced the severe pain I was in, I'd get cut off and told about their arthritis or did I hear about so and so's "real" problem. My mother-in-law actually told me that I don't know what pain is...um, ya, I'm pretty sure I do! I didn't make up the four month thing, I read that somewhere on-line and it has helped me to understand that people were not being intentionally mean to ME, that's just human nature for the majority of people. Yes, some people have endless compassion for other people, but I've found that most do not (for a while yes, extended no), so I choose to no longer take it personally (which I very much did initially). I have lots of good friends and get along very well with my family, but this is an invisible illness. If I had a cast on my arm, it would be a constant reminder that something is wrong. But when I looked just fine, there was nothing tangible for them to point out something was wrong. As an aside, I recently found out about a pretty serious problem one of my family members has going on. They never talked about it and really don't expect anything by way of support or attention, so that is helpful too. Some people want a lot of attention drawn to their health problems and others do not. Some want attention drawn to THEIR health problems, but don't give a darn for anyone else's (we all know someone who has the worst of everything no matter how trivial, but you lose an arm and they can't stop talking about their hang nail and how serious it is). Maybe some of these people we are hoping will step up to the plate for us have their own issues that WE don't know about.

It has taken me literally hundreds of hours of thinking about, observing, and reading to get to a point of acceptance that this is just how people are and I need to let it go...don't get me wrong I NEED and would LOVE to have the support of just one person for LD, but I just don't have it and never will. I suppose one day when this is a validated illness and others are talking about it, we may get a few minutes of recognition such as "wow, I didn't know that," but I don't expect anyone will remember or care what I went through unsupported.
Posted 10/23/2011 7:05 PM (GMT 0)
Unfortunately I have to agree with this post, Tala. You were able to explain what I meant by pulling ourselves up by our boot straps!

We do all need to come to a place where we accept what we have - and don't have - even when it comes to support. For a very long time - until I finally experienced some healing - did I have my hubby's support for my TBI's - he was supportive of me like nobody's business, as long as I didn't mention any of the TBI's. Fortunately now, he is completely supportive.

I think that the other post that was made here close to the same time as your post colored my thinking a little. I really worry about those that have hit bottom as there is so very little I can actually do to help. I want to reach out and touch them, maybe give them a hug, or at least have a nice long chat - face to face - with them. So I'm probably a little touchy with some posts. I know from personal experience that that's such a dark, lonely place to be.

Sorry if I offended you or made you feel challenged. blush
Posted 10/23/2011 7:11 PM (GMT 0)
Actually Scorp, your post makes a lot of sense to me. What you said about 'fair weather friends' is true in my line of thinking. Some may refer to that as 'once bitten, twice shy'. When a friend gets really ill, it challenges the relationship. I feel the same way about my 'fair weather friends' - I don't hate them and will even talk with them when we happen to see each other in town, but get close to them again? Why?
Posted 10/23/2011 7:16 PM (GMT 0)
And when  Springsjean said

"I used to scream songs in the car. Songs about hate and rage"

Don't get mad -   I know you didn't mean it to be funny and I am only laughing because of the visual it created but dang, I laughed my butt off!   I probably have done that before myself.

and "I learned to love my couch"

Ok, this was hilarious!  It was hilarious because I learned to love mine too!!!!!!!!!!!  A little too much, I must say.

So much so that the cushion is smashed in and dips way down!  It is a leather sofa with attached cushions so I cannot flip it.   I have to cover it up when people come so they don't think I am lazy and always on the couch!!!  Heeheeheeheehee.  I never was before but since sick, I spent many hours a day there and SUNK THE CUSHION! blush

 

Posted 10/24/2011 1:52 AM (GMT 0)
Traveler,
Not offended at all! I was where all of you are for a very long time and have been able to move on. I was just trying to help others move past the hurt they are feeling. Believe me, I felt exactly the way all of you have described, and was at a very low point before making the decision to move on and be OK with it all.

A huge part of my emotional healing has come from James Van Praagh's books - look him up on Amazon.com; if you can accept what he has to say it will change your life!
Posted 10/24/2011 4:19 PM (GMT 0)
Thanks for the tip Tala! So you've healed and moved on? That's great!!! I was afraid that you had just been quite ill and didn't post for a loooonnnngggg while! That combined with that other post and I just got worried.

I am sooo happy that you are doing better! turn
Posted 10/24/2011 10:29 PM (GMT 0)
Thank you, Traveler! Right now I feel pretty much normal...hopefully it will stay that way! I've been doing the Jerigan at-home protocol for about 6 months now and after everything else I've tried, this seems to be working. I hate to even think of myself as "healed" because then I will be disappointed if/when it comes back yet again. I'm just appreciating that I'm feeling well for right now. Thanks again for your kind words!
Posted 10/25/2011 5:07 PM (GMT 0)
well....all of you...i have enjoyed all the different points of view...i thank all of you for being apart and offering to help in others time of need,......i am physically feeling better...my muscles arnt as tight and feel "lighter"...my joints on the other hand r trying to fly south for the winter....lol....and losing relationships has been the hardest thing i have ever been through...me being sick has made it worse...but im not giving up ..i promised big daddy that i will continue to press on as long as i have my right mind....and some days my mind being right is negotiable.lol....i feel stronger on the inside because i have had time to let it all "sink in".....i have made contact with a friend that i dont get to see all that often who is a personal trainer...and has made me a exercise regiment to help me along my way......i feel hopeful and excited that this is alot like "labor"....a woman carrys a child for months....and as it grows closer to the end...shes in pain...back hurts...she cant bend over she cant tie her shoes...she cant hardly breath she cant sleep and she begins to start hoping and praying it will be over soon shes miserable...but hasnt even went through the hard part yet...then when she cant take another day feeling like this...the labor starts...the pain undescribable and feeling like u r gonna die if u have one more pain...but the whole while knowing that with every pain...with every tear...then end will bring a beautiful result.....a miracle....
Posted 10/28/2011 10:28 PM (GMT 0)
I have always been very active, and prior to dx, volunteered a lot, and involved in lots.

Have lost all but one friend. No one wants to hear, do, help, in any way. Don't have much family, kids are very supportive -- to be honest, most of my support (and validation that I have Lyme) is from dr's and mental health professionals. I guess I see therapists more often than dr's -- so they can see neuro and other changes. And I happen to be in the care of very caring people.

But people I don't pay -- or my ins doesn't! -- nah. People do things like assume it's over in a week or month. Or invite me to "got out to relax". Well, driving scares me, because of fog and meds, conversation exhaustion (asthma/pulmonary probs due to coinfection) and walking across a room or building or parking is going to drain me completely for at least an hr. So how would going to a "girls night out" relax or help me? Geesh. Morons.

I like to keep repeating "long term treatment" and systemic (cause I keep getting asked "oh, you have that, too?!". Systemic, people, systemic. Look it up. And, no, I'm not better. Treatment was estimated to be 12 mos and it has been two.

Well, no friends sure does make it easier to buddy up to my couch. :)
Posted 10/28/2011 10:31 PM (GMT 0)
PS Was going to say that prior to dx I went out and did so much because I got told, and believed, I was "just" depressed and if I "got out" that would help the depression. Well, now Lyme is so bad, and with meds & herxing, even worse -- I just can't go out. And, it seems, if I'm not making the effort to go out, no one comes to me. I struggled with it and was so angry for a time (and I'm sure I will be again, at points) but right now, the less friends, the less expectations on me. All I want to do is rest. Right now, thanks to my "friends" I can rest all the time! I sort of see it as a plus, atm. I am too tired to field much support -- that would mean cleaning, talking, etc. I just want to hibernate!

I'm confused as to why people were more sympathetic to me before my dx -- but they were. Oh, well. Maybe they thought they were "humoring" me -- now that I have a real illness (and I don't talk about it much, either) it changes the dynamic. They aren't putting up me, I'm really sick. I think they don't want to feel they "should" help -- and they know they should -- so they just retreat.

My closest friends are those with major life issues (not Lyme). But they get the ongoing, intense daily struggle. Other people just don't see to get it -- or care.

Geesh, I am on a venting spree...

Post Edited (campl) : 10/28/2011 4:35:01 PM (GMT-6)

Posted 10/29/2011 2:22 PM (GMT 0)
well let it out...camp....lol...and the part where u say "girls night out"..then "morons"..made me bust out laughing...jus yesterday....a girl i hardly ever talk to since being diagnosed called me and told me that they are having "date night " and wanted me and my husband to "tag" along......thats what went through my mind whe she said u need to get out of the house and relax a little....i thought..."you idiot".....it would mean more to me for to give me a phonecall or bring supper by for my family than for u to invite me on a "date night" .....and to add insult to injury....my mother-in-law was invited......c mon.....that one really made me laugh.....i have nothing against "in laws"...but lets be reasonable...they are hard to take even when u feel good.....people just dont "get it"....but im going to stand my ground and they will just have to respect where i am right now and if they want to see me or spend time with me...they will have to come to the house to do it....because me and bed r best buds right now...lol
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