I gave them lots of things to read on Lyme a few weeks ago and it describes exactly what I am/have been going through and why It also talks about the neuropsych stuff. They are highly educated (and they will let you know) people.

They say little things and ask questions that show they doubt without coming right out and saying it...they think a person should not complain and that I am "weak."

They have no idea the hell I am going through and that it is real and not self-imposed. If you can't turn to your parents who can you turn to? My mother gave a cursory read to some stuff and seems more open but she has no one to turn to for support either because her friends are of another generation and probably don't believe this stuff.

Its hard enough being sick without this crap. My father is the type of person who thinks people should not be victims and stop complaining and blaming other people. I actually share a lot of his political view but he does not and will not try to get this.

I feel like my disease and my pain is hurting those around me. I end up having to protect everyone else because I don't want them to hurt, but I need support right now. I thought about finding a way to make it look like an accident so I could get out of this double bind I am in (or am letting myself get in!)

I care about others and wish I had a way to "excuse myself" for awhile and go off into a cave until I come out healed. Its like being a leper...

I am afraid if I let my feelings of pain and grief come out I will hurt others who love me.

I am seeing a counselor but I can't talk to her all the time and she does not understand Lyme disease. I also never know when I will have a good day or a worse day or when I just need to cry (it sure feels good to just cry) and need support, sometimes I need to say, "I'm scared right now" but no one wants to hear that. So, I have started writing it all out as if talking to myself so that I can be there for myself.

This forum helps because I am talking to others and am not hurting them with my pain and grief and fear....its too much for a person to bear alone.

Thanks for listening I am glad you all are here although I am sorry you all have been hurt by Lyme disease...but thanks for being here

Love and prayers to all of you,
Pippy

I really feel for you.

Sadly, I think this happens to people a lot (disbelief by family and friends who we think we can rely on for support).

My husband did not believe in my CFS for many years. But, strangely as soon as it was discovered my CFS was Lyme he believed me! (there were no change in symptoms mind you, just label).

My dad has said to me many many times: "Are you sure you're just not bored, dear?".

Another friend said: "Yes, I've been really depressed too recently"..... (what?)

So, you're right. Places like Lymenet seem to be the only place to go to be understood and not pitied for "being a pathetic and weak creature"!

Sounds as though your father has never had to deal with a real physical illness and therefore it's impossible for him to imagine what you are going through. So, he imagines what he wants to imagine instead (that you have a psychological illness or are weak). Probably he has some degree of denial also and doesn't want to face the fact that "his baby" is sick. (excuse me guys, but I do wonder if that is partly a male knee-jerk reaction as I know so many women who have that kind of attitude from their husbands/partners/dads).

I hope that eventually you're parents will wake up and smell the coffee.

DLL
www.wendyslymefund.co.uk

I see it daily with my mom and grandmother, so please know that you are NOT alone! Not only my grandmother, but others in the family.

I hope you can find a way around it and keep your mental state a healthy one. It can wear you down and cause much stress that you do not need. Seeing a counselor is a good idea, but that sucks that you can not be open with the lyme as you want.

I have a hard time not telling people. As I am sure I get on many nerves, but may be able to help a few in the meantime.

I am not sure how old your parents are, but I think part of my grandmothers problem is just plain ole not remembering what she has read or what we have told her, but you can not tell her that. She still has a hard time believing that me and my 2 girls are infected too.

Possibly they are in a state of denial. I would just not call or go over much for a while if possible. See how that goes, and just pray that they can be open to your medical issues and can make this journey with you.

You may need to make some very hard choices here. I have always had a standing policy (even without illness)--I dont associate with "toxic" people. And if that is a relative so be it.

There are a number of relatives who I have not spoken with close to 10 years. Not my parents but aunts, uncles, and cousins. for my own health.

It is a shame, Kara.....finally I have found someone who feels the same as my mom and I feel.
There are times you must distance yourself from certain people. For they just bring negativity to your soul. All we can do is hope/pray that they can come around on their own.
You can only reach out to someone soooo many times and not get a positive feed back from them. That just keeps the "keets" stirred up!!

~ Amanda

hang in there darlin..come here and others will show you that you are not alone.

I hear everyday...Well it's been a year now ,should you not be the same ole person I meet over 20 years ago.Where is she??

Wow, how much longer are you going for in treatment because of that tick stuff?

And the classic...well she always has a headache and cannot come to the party...

So not only must we physically suffer but must be left to listen to the senseless jabs thrown about by family and friends,neighbors and co-workers...pays to read and have compassion for they too one day shall need support and understanding from a life changing event..unless they sit up on a pedastal and are not touched by life.

My father has told me that I'm a wimp, that I'm not sick, that I 'want' to be ill and that I have too much time on my hands.

He even said this is party because I turned my back on God - I have NO idea what he is talking about concerning that remark.

He has told me that if I just got a job, if I lost weight, if I went on the Atkins diet, if I exercised more, if I went to church, if I drank more water, if I had a glass of wine a day, etc, that I'd put this all behind me.

My sister says that I'm just turning into a hyprocondriac like my mother.

My husband just ignores the entire situation.

It's hard when you have misunderstanding, ignorance and unsympathetic people in your life.

Just wanted to let you know that I too just came back from visiting my parents and some family members.

I concluded that my first idea of getting a service dog to help me get through this was the best idea afterall.

And that living with my parents to help me get through this was not good for my health as I originally thought almost 3 years ago.

I also have noticed that some people have a gift of being able to be supportive and helpful and others don't have a clue.

I am not sure which person I would have been before lyme.

I continue to remind myself that I look fine on the outside and people can't see the swelling and pressure feeling in my head, or the stiffness, or weakness, or high pitch sound in my ears or cognitive challenges, etc. that are happening on the inside.

I know how it is. I'm sure I was that way too until I got sick. I've had so many physical sensations I could not have imagined until I got lyme. There's just no way for people to imagine the migrating muscle pains, beestung knees, constant allover twitching, the bone-crushing fatigue and brain fog unless they've experienced it.

I'm sure I'm paying now for not having had much empathy for others in the past. By that I don't mean that I ever said anything mean to anyone. It was just in my thoughts that I "wondered" if people were making it up. But thoughts are definitely "things"!

Though we wouldn't wish lyme on another, it seems like one of the only ways others would be more understanding would be having experienced something similar themselves.

So we have to be strong for ourselves and find support wherever we can, which means that support may not come from the people we need it from the most.

Hang in there,

Sue

Hi! You have described what so many of us experience or have experienced with this insidious illness.

Trying to educate others about Lyme and co-infections can be frustrating at best. When you are young and it is your parents that is a tough one. Having been brought up in the mindset that one must "suck it up", "be tough", or "don't be a wuss" can set one up to not only be looked down upon by family members, but also by self!

Your comments: "I feel like my disease and my pain is hurting those around me. I end up having to protect everyone else because I don't want them to hurt, but I need support right now. I thought about finding a way to make it look like an accident so I could get out of this double bind I am in (or am letting myself get in!)

I care about others and wish I had a way to "excuse myself" for awhile and go off into a cave until I come out healed. Its like being a leper...

I am afraid if I let my feelings of pain and grief come out I will hurt others who love me. "

WOW!!! That sounds like how I felt about a month ago!!! At that time I had NOT seen Lymenet or any other site for support. I thought "If this is good as it gets I don't want to be here." It is a very real and vailid feeling! Many of us have felt that way! I felt that I could just switch off my brain and I would be out of here! I was not suicidal or planning how I would "check out." I just felt so tired and felt that life was like wading through quick sand- mentally, emotionally and physically... It felt really difficult.

Relationally I felt bankrupt because most of the people I knew were frustrated with me because I could not work and "had no life".

I felt that I had no energy to "pretend" to feel well and refused to try to develop new relationships behind a facade.

BUT as I began to talk with others with Lyme and some in remission I realized that there IS LIFE AFTER LYME...

For those of us who were chronic before we were diagnosed and have had long-standing problems and spent countless dollars trying to get well we must band together with others who have a clue what this is like.

Setting boundaries, prioritizing and not investing our energies indiscrimnately is all part of being able to cope and heal.

Others have mentioned refusing to be in "toxic relationships". That is a must. We do have to distance from those we love at times for one reason or another. Often I have told others, "Don't look to parents to give you as adults what they could not give you as children." Chances are they have not changed and are not capable of meeting those needs. As adults we have to accept ourselves and understand that we can get our validations from other sources. We also learn to nurture ourselves and accept ourselves and not take in the judgmental attitudes of others.

When our acceptance by others and our self-acceptance is "performance-based" we really take a tumble when faced with a chronic illness. That is where we must determine what we will and will not take in and internalize. Our worth, value and significance is not based on performance.

Now we must learn to "be". And as we chose daily to "be" we take a lot of the pressure off of ourselves.

Yes, one thing every human wants (no matter their cultural background, belief system or educational status) is to be loved.

Now we must love ourselves more than ever if we are to recover and help others to do the same.

There is power in words as well. Check out The Power of Words at this link which I find very helpful. Even if it is expressed in a way that may not fit with your belief system think about the message.
http://passagetopeace.com/Bluestar/Power.htm

Love and Peace,

Being Scared, angry, sad etc is not a sign of weakness, its a sign that you are dealing with a very dabilitating disease. People no matter how much they love us or how much they care can not truely understand this disease even IF they want to because They are not going through it.

We all "look" a basillion times better than we feel, and healthy people have a hard time having sympathy for an illness they cant see. This is HELL and you need a soft place to fall.

We are not victims here. We are Battlers, Warriors! But even Warriors need a place to rest up and find healing. Crying is not weakness. Crying is shedding the pain so that we can stand up and fight on!

When my children hurt, yes it hurts me and this is good, its what motivates me to find help for my child.

If you mean it drags people down around you or hurts them in ways other than a sympathetic way then maybe it is they that are weak and not you.

You are welcome to shed your tears of pain, suffering, and fear here. Its what gives us the ability to go on. We understand and we are here for you.

Very well said!

Hope you are getting all of the love and support that you deserve!

You, too, Pippy!

(smile),

lol j/k

I know that hurts because thats what we want, just an inkling they understand. I've had this DD for three years ,Im also 28, and my mother still believes I need to take my zoloft and be happy.

ahem...

Just focus on you right now.

It's not your fault you are sick and you didn't ask for this. It is unfortunate people don't want to understand, especially those close to us, but at the end of the day, we have to think of ourselves and not be self destructive, when we feel no one cares.

I have the same problems. I have no parents, but my husband doesn't want to open his mind and I have been educating him for months. He's on board/he's not on board. It never ends. I get discouraged as well, cause we want validation that we are ill and we want them to understand that we would never fake something so horrible.

So vent, vent,vent. I do it all the time. That's what we are here for to help each other, cause it's a lonely, complicated illness.

Just concentrate on getting well, and keep a journal. Keep telling yourself, that you are not crazy and you are sick, with a bacterial infection.

Take Care
Lymiecanuck

Hes the one sick and I know more what is happening to him than he does. I have been as supportive as I could. I just wish alot more people can be like me.

When I talk to someone or my Hubby does we are almost always trying to defend him in someway. People often think we are making it up.

So I ordered flyers about Lyme and I pass them out to almost everyone I meet.

Ok enough about me. I tend to babble....LOL I hope you find the support you need and deserve. I know being here you will never be alone!!!!!!!!

quote:

---

Originally posted by pippy:
Hi,
I just need somewhere to be heard right now after my recent experience.
I just got back from visiting my parents. I started antibiotic treatment for Lyme disease 6 weeks ago and needed a place for support....Big Mistake!

I gave them lots of things to read on Lyme a few weeks ago and it describes exactly what I am/have been going through and why It also talks about the neuropsych stuff. They are highly educated (and they will let you know) people.

They say little things and ask questions that show they doubt without coming right out and saying it...they think a person should not complain and that I am "weak."

They have no idea the hell I am going through and that it is real and not self-imposed. If you can't turn to your parents who can you turn to? My mother gave a cursory read to some stuff and seems more open but she has no one to turn to for support either because her friends are of another generation and probably don't believe this stuff.

Its hard enough being sick without this crap. My father is the type of person who thinks people should not be victims and stop complaining and blaming other people. I actually share a lot of his political view but he does not and will not try to get this.

I feel like my disease and my pain is hurting those around me. I end up having to protect everyone else because I don't want them to hurt, but I need support right now. I thought about finding a way to make it look like an accident so I could get out of this double bind I am in (or am letting myself get in!)

I care about others and wish I had a way to "excuse myself" for awhile and go off into a cave until I come out healed. Its like being a leper...

I am afraid if I let my feelings of pain and grief come out I will hurt others who love me.

I am seeing a counselor but I can't talk to her all the time and she does not understand Lyme disease. I also never know when I will have a good day or a worse day or when I just need to cry (it sure feels good to just cry) and need support, sometimes I need to say, "I'm scared right now" but no one wants to hear that. So, I have started writing it all out as if talking to myself so that I can be there for myself.

This forum helps because I am talking to others and am not hurting them with my pain and grief and fear....its too much for a person to bear alone.

Thanks for listening I am glad you all are here although I am sorry you all have been hurt by Lyme disease...but thanks for being here

Love and prayers to all of you,
Pippy

---

quote:

---

Originally posted by pippy:
Hi,
I just need somewhere to be heard right now after my recent experience.
I just got back from visiting my parents. I started antibiotic treatment for Lyme disease 6 weeks ago and needed a place for support....Big Mistake!

I gave them lots of things to read on Lyme a few weeks ago and it describes exactly what I am/have been going through and why It also talks about the neuropsych stuff. They are highly educated (and they will let you know) people.

They say little things and ask questions that show they doubt without coming right out and saying it...they think a person should not complain and that I am "weak."

They have no idea the hell I am going through and that it is real and not self-imposed. If you can't turn to your parents who can you turn to? My mother gave a cursory read to some stuff and seems more open but she has no one to turn to for support either because her friends are of another generation and probably don't believe this stuff.

Its hard enough being sick without this crap. My father is the type of person who thinks people should not be victims and stop complaining and blaming other people. I actually share a lot of his political view but he does not and will not try to get this.

I feel like my disease and my pain is hurting those around me. I end up having to protect everyone else because I don't want them to hurt, but I need support right now. I thought about finding a way to make it look like an accident so I could get out of this double bind I am in (or am letting myself get in!)

I care about others and wish I had a way to "excuse myself" for awhile and go off into a cave until I come out healed. Its like being a leper...

I am afraid if I let my feelings of pain and grief come out I will hurt others who love me.

I am seeing a counselor but I can't talk to her all the time and she does not understand Lyme disease. I also never know when I will have a good day or a worse day or when I just need to cry (it sure feels good to just cry) and need support, sometimes I need to say, "I'm scared right now" but no one wants to hear that. So, I have started writing it all out as if talking to myself so that I can be there for myself.

This forum helps because I am talking to others and am not hurting them with my pain and grief and fear....its too much for a person to bear alone.

Thanks for listening I am glad you all are here although I am sorry you all have been hurt by Lyme disease...but thanks for being here

Love and prayers to all of you,
Pippy

---

I think if they will read it that they may understand you better..

Had to make some corrections. Having a dyslexic day..I do not see your email address. If you think my daughter's psychiatric lyme story will help, email me with a contact address. Thanks.

Makes some finally believe what you say.

Consider visiting the above named site, as there is lots of info on how to talk with friends and family about invisible disabilities. Also booklets you can order for friends and family so they will understand more about just what it is like being in your body. I found this very helpful. The author of the booklet has MS and Lyme, and the book was right on target in addressing the issues which we deal with everyday. I don't even tell people I am sick unless I have to, as I think it sets up a "different" relationship with that person. I explain that I am just taking a long break from working to catch my breath for awhile. It is also difficult to explain the cognitive problems, such as word finding, blanking out, forgetting things, etc. But, nonetheless, these things cause relationship problems because others cannot possibly understand what it is like for a bright person, 6 years of college, graduate degree, 135 IQ now tested at 100, etc, etc, who cannot hold a simple conversation with a neighbor because that "thought bubble" just simply "POPS" right in the middle of a thought. This book helps others understand what this is like.

As you can tell from all these responses, you are not alone. There are plenty of us out there with the same struggles. It helps me to come on here and read this every once in a while. I have been in the phase where I am trying to get on with my life, and downplay my disability issues, but, nonetheless, it is still very much getting in my way. But we laugh it off when I slip and say a totally outrageous word when I mean something else, or put the cleaner in the refrigerator. Then spend days looking for it because I imagine where it might be. I have made some progress organizing my house, as over the last several years of Lyme brain, trying to keep a job, etc, etc, it was a total mess and no organization. Couldn't find anything, as everything was in piles.