posted
I am so sorry but I have to vent right now with people that might understand. I got a phone call from my dr this morning(the one I am leaving soon) while I was working. He told me that my SED rate has increased a bit and I have really low ferritin and my WBC is still high.
He ended the conversation by telling me again to "keep being a warrior. Even when you were in the hospital (I had c diff and nearly died) in intensive care, you never complained. You are tough, you are a stoic. No one would know you are hurting. Keep it up." THAT is so annoying and upsetting to me.
I am so TIRED of having to be the strong one all the time. I wanna be admired for living a full life, not for winning the gold in the suffering Olympics. I don't want anyone's pity, but I am so sick of having to just shut up and be tough.
I never burden anyone with how I feel for the most part. Im kind of a nurturer by nature. People like me are relied upon when others are suffering, but when I suffer I am expected to just take it and keep going with a smile plastered to my face. I am so tired of this.
Thank you for letting me vent. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I know just what you mean. It is OK to be down and feel sorry for yourself at times. The stoic strong types never do get the sympathy they deserve. Sympathy is not pity and is soothing. You have ours.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I find when someone calls out that I have a positive attitude despite what I have been through and am still experiencing, it usually makes me tearful, because it makes it all so real. I think the veneer that covers my true feelings is pretty thin, and when given the chance, the vulnerability spills out all over.
I am sorry you are worn out, and just as sorry that you are receiving medical news that is upsetting.
I think you don't have to shut up and be tough, but I know only you can walk the path of deciding how, when, and with whom to share your real feelings.
Your strength is a double edged sword that keeps you going, which is the good thing about it. When the long haul keeps getting longer, though, I think it's perfectly normal to have depleted reserves. I think there are probably people in your life who will accept you even if your veneer cracks, so you may have to cut yourself the same slack you cut others. In the meantime, I'm glad you shared here, and I hope things get better.
-------------------- Bboop Posts: 17 | From New Jersey | Registered: Apr 2012
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posted
Thanks for the responses. It is hard to know who to talk to about this. I have friends with this illness and friends with other issues that are not related to Lyme and I am reluctant even with them to really share fully how I am feeling. I dont want to burden anyone. My friends are important to me and I don't want to risk losing them by being negative or depressing in any way. At the same time, if they expressed any sadness or negativity, I of course would be there for them.
I wish that I had an neon sign on my head like, "I am hurting and tired and at the breaking point so cut me some slack and treat me with the respect and care I give to everyone else", but obviously I can't do that.
I have had a lot of things happen in my life that have caused me to have thick skin. I am strong as hell I know that and I am proud that I am so tough, but I am so vulnerable now emotionally and frail physically.
I have put myself in this position though. When you spend your life denying you have needs, people assume you can handle anything. I hate how being sick has made me so prone to these moments of despair. I was a pretty happy person before this disease hit me at full force.
Thanks again for the understanding. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: My friends are important to me and I don't want to risk losing them by being negative or depressing in any way." (end quote)
There's a huge difference in being negative and being honest. Huge. Same with being depressing and just being real.
You may be doing both yourself and them a huge disservice by not being authentic. Trying to deny the realistic nature of what you face is not going to really work for long.
Get real and my bet is that you will feel emotionally better about the level of your friendships.
You can state how you feel or what is happening - as fact - and move on to talk about (or listen to) other topics, etc. But you also should be able to talk about your feelings, thoughts, fears, concerns, wishes, etc.
THAT's what makes it friendship. Less is just being an acquaintance.
Being able to be real - in reasonable doses and measure - is what makes us multidimensional, honest, authentic, well-rounded or whatever other terms work for you.
A good sense of irony and even humor helps keep it all in perspective and balanced.
Yet, friends are not therapists so you might seek out an ILADS educated LL counselor. Frankly, I think most of us can benefit from that kind of education as the world of feelings really does need some guidance for anyone.
It's very complex when you move from feeling to learning how to best express and communicate with others. That's hard even for those in good health. Since lyme changes so much, it's vital to have a LL professional in this area.
Area lyme support groups -- and also groups that focus on healing arts or nature & hobby fun of some type can be a true lifeline, too.
"Healing Circles" exist in many areas. Just Google for your area. For some, words need not even be spoken to feel true welcoming and nurturing.
Bottom line: we need to drop our idea of what it means to be strong. It needs a new definition. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, I know what real friendship is. I am just a different person from many , I suppose. I dont love or care about or respect many people. The ones that I do, I am devoted to entirely.
I know the difference between friends and acquaintances BELIEVE ME. I am not an inauthentic person, perhaps just an overly considerate one with the people I love and care for most.
I don't expect a friend to be a therapist either. I have had things happen in my life that you don't know about that make me more reluctant than most to share what I feel unabashedly.
And the one thing I don't lack is a sense of irony and absurd humor. my sense of humor is the only thing keeping me afloat right now. Thanks for your perspective. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have found that those people who when i am being "honest" disappear are not really friends after all.
i really have no one, and i mean no one, that understands lyme or what it is like. that makes it difficult to be honest..well hell, i don't have anybody to be "honest" with...
so i try to be try to myself and to hell with all the rest.
and jess, you will find out that here on this board i am known for having quite a different sense of humour also.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Well, here goes.....
Chastain, you might not want to hear this, but I sort of agree with Keebler.
I can't remember the circumstances exactly, but a friend of mine blasted me for being so stoic and not sharing my true feelings.
He said that I was denying him the right to be a friend to me.
By being the shoulder for him to cry on but, not trusting anyone enough to cry on theirs.
It really made me upset to hear this.
Afterwards I realized he was right.
For me, I guess, it's a trust issue and being vunerable.
But please don't take this to mean it's the same for you.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6153 | From Columbus, GA | Registered: Jul 2004
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posted
Alaska, I have three people in my life that I can fully be myself with, including one with Lyme. I am lucky in that sense. In terms of worrying about "burdening them",I suppose it is just the way I am built. I truly care about people rarely but when I do, I care enormously.
I am someone who always kept things to herself and always dealt with any emotional upsets fairly well. Since I have been so sick lately however, I find it harder to cope with things in general.
And Alaska, I can fully relate to the trust issues that you are speaking of. Thanks for the nonjudgemental post. I do appreciate it. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by chastain: He ended the conversation by telling me again... "No one would know you are hurting. Keep it up."
I think that your doctor feels better when it appears that his patients are coping well.
He's not giving you permission to be "sick."
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Carol, my dr is ODD lol. He tells me I am the sickest patient that he has ever had but he admires my "tremendous stoicism."
He tells me that I need to just "be a big strong girl" and deal with any side effects of any meds no matter how ill they make me. Just one reason why I am switching drs.
He is a decent man and he cares a lot and is fascinated by my case, but he just doesn't have what it takes to get me better, sadly.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
My parents raised us to keep our personal business to ourselves. This included illnesses etc. Now I know why.
When we got lyme, I stuck my neck out and shared this with many of the people around us. Big mistake. Most really did not want to hear it.
Some have been downright nasty.
So, if we had it to do over, this would have remained in the immediate family and we would have kept the CFS and fibromyalgia label intact.
Extended family, in-laws in particular, have been the worst.
We have tx our lyme, and are functioning pretty normally (thank God). My worst sx now is a bad case of battle fatigue from the beat down we have gotten from those around us.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Linky, I am lucky that I haven't had friends or family be overtly nasty to my face because of this illness. I am so sorry you have experienced that.
I will say however that i have had a few people just disappear since I have gotten sick without a word of explanation. THAT has been super painful. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
The disappearing act is, in a way, just as painful. Those you thought were friends just cease to exist.
I hope things improve for you.
Take care.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Yes, Linky the disappearing is the worst in my opinion. Nothing makes me sadder than people who just up and go for no reason at all.
I thank you for your kind words. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I'm glad we can all be here for each other.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi Jess. I am not nearly as stoic as you... But I know how you feel. You don't want to be complimented for "dealing" with the disease... You just want the disease to be gone. And you want sympathy, but you don't want people to treat you like your sick... And yet sometimes you just wish you could check out.. You wish you looked more sick so people would understand.... But then when they do, you cry, because you are just so tired of dealing with it all, and someone actually " got it" for an instant...but then you know that in the next instant, they have moved on...but your still dealing!
Glad you could come here and vent. And if you don't feel like being stoic... Don't. Have a good cry. Take a tantrum. Take a day off from nurturing others and do something indulgent for yourself!
Feel better.
Posts: 1728 | From USA | Registered: May 2011
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posted
Hi Kuduzu. Thanks very much for yr post. Yeah, its difficult because throughout the course of my life I have been the one to take care of everyone else. I am always "the rock" that people lean on.
This is the first time in my life where I need or want to lean on others, but I am reluctant because I don't want to push people away. Your statement of "you want sympathy, but you don;t want people to treat you like you are sick" really sums it up well.
Oh, I cry plenty lol. It's pretty much the way I get to sleep most nights. I really appreciate yr post, it really captured what I am feeling in a visceral way. Jess.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt read all the replys and i know how you feel about being strong and im guessing you are feeling mad at the doc
but there are studies that show he is right-especially in hospital it is a fight-a war and the pain in the a$$ patient who keeps fighting and keeps the staff on their toes is the one who survives
im so sorry so many are going thru this but i hope you find the strength to keep going
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Hi ipkayak. I am not so much angry at my dr as I am frustrated in general with my situation. I was a strong athletic happy go lucky girl before getting really sick in the past few yrs, and everyone seems to think I can just continue to be that strong indefinitely and handle any misery that comes my way with aplomb, like I always have.
I have now reached the point where I am too exhausted physically and emotionally to pretend to be unwaveringly strong anymore.
I do agree however that in another sense my strength is keeping me going. I was told I was going to die in the hospital in spring because of C Diff. A huge part of me longed for death, just to end the pain. Then my survival instinct kicked in. One day My dr came in and told me unless something hit I wouldn't live a month and I remember thinking , "WEll to hell with that, I WILL NOT DIE."
I know it isnt simply a matter of will that made me survive, but I can't help but think that my anger at my situation and my desire to fight at all costs helped in a very real way to keep me alive. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
Hi chastain. I am a new member since early this morning, cannot sleep. I feel and identify with you. I have always been healthy and very strong mentally and took care of everyone and everything. Since I found the tick on my back last month, I have all the symptoms of Lyme disease (all stages). Doctors dont believe me and say these symptoms should appear months from now. My family ignore me and expect me to function normal. My sisters, coworkers and friends disappeard when I told them about how bad I feel. We need to keep our faith and hope.
Posts: 4 | From Fairfax, Virginia | Registered: Jul 2012
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posted
Hi Sehat. I am sorry you are going through this. I can't sleep either. I am glad you understand what I mean about being the one that everyone relies on. I find it amazing that you can give and give so much and get so little in return sometimes.
As I said yesterday, there is nothing worse than people just disappearing from yr life, and I am sorry you are dealing with that as well.
It sounds like you and I are both nurturers and its hard to understand how people can be so seemingly callous, especially when you give them the best parts of yourself freely and without expecting much in return.
I really hope things get better for you soon. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
I can really identify with how you are feeling.
I, too, am the type to put on a "brave face" for pretty much everyone except my husband and mother. They certainly see me at my worst. Other people are like, oh, how is she doing, is she still sick??? She seems Ok/looks good. My husband is like, yes, she's still very sick, she's just a trooper. I tend to try and act like everything is ok as much as I can.
Part of that comes from a series of events that I've been through. I'm sort of conditioned to make sure everything looks great on the outside but inside I could be completely broken down. But I always try to remain strong, and I am pretty tough, but I have my moments, and I allow myself to have them around those I trust the most (basically just my mother and husband).
My best friend did the disappearing act a couple of months after I really crashed. She just didn't care to try and understand, I guess.
So I know how it is to not really have friends. I don't post often on here, but I'm always reading posts. . I'm really thankful to have a place where I know others will be understanding. Really helps to know I'm not alone.
Hang in there. And remember, you are human, not superhuman!
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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posted
Skies, thanks so much for the thoughtful post. I am just like you in the sense that I am the person that always acts like everything is ok even if I am crumbling inside. I have always been that way, even before I got sick.
I experienced some things in my life early on that forced me to grow up really fast and to learn to protect myself from being vulnerable. One of the ways I did this was to cultivate a kind of impervious front, like nothing could ever hurt me.
I actually was quite happy and fine with that way of coping and living until recently when I have gotten so desperately sick. I am lucky to have 3 people in my life that I can fully be myself with, my best friend of 15 years, a friend who has Lyme as well and my dad. I am glad that you have your mom and husband.
I really hope things get better for you soon. Thanks so much for posting. It definitely is nice to know that maybe we are Lonely with this damn disease, but we aren't truly alone. All the best. jess.
Posts: 651 | From ct | Registered: Sep 2011
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quote:Originally posted by chastain: I am so sorry but I have to vent right now with people that might understand. I got a phone call from my dr this morning(the one I am leaving soon) while I was working. He told me that my SED rate has increased a bit and I have really low ferritin and my WBC is still high.
He ended the conversation by telling me again to "keep being a warrior. Even when you were in the hospital (I had c diff and nearly died) in intensive care, you never complained. You are tough, you are a stoic. No one would know you are hurting. Keep it up." THAT is so annoying and upsetting to me.
I am so TIRED of having to be the strong one all the time. I wanna be admired for living a full life, not for winning the gold in the suffering Olympics. I don't want anyone's pity, but I am so sick of having to just shut up and be tough.
I never burden anyone with how I feel for the most part. Im kind of a nurturer by nature. People like me are relied upon when others are suffering, but when I suffer I am expected to just take it and keep going with a smile plastered to my face. I am so tired of this.
posted
So sorry for all the lost friends and family indifference here. It makes me sad. I see part of my family in this same situation. My dad told me everybody has issues and to suck it up. That is totally not him. He got a real look at my illness about a year ago and has been much more understanding since then. It might help to reach out into the Lyme community and find friends to call and visit with. I have a long distant friend I have yet to meet that I met through her uncle. We both have Lyme and does my heart good to talk to her. We are honest and let our hair down and talk about how rough and challenging this disease it. I also talk to a couple of guys in the WichitaLyme support group. There again, I can let my hair down and we just talk about issue with the Lyme. This helps having someone who understands the hell this disease creates in people's lives. Sure helps me. I need this because the healthy people just don't understand including my husband.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
Cozy, yes it is hard to make people that do not experience this illness understand what its like. I have a long distance friend with lyme too that I met since being sick who is really important to me.
I think the coolest thing is when you can find a friend who happens to experience this illness but that you also have other things in common with besides being sick. That is the case with my friend. I hope that you are experiencing that with yr friends with lyme as well. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
We have not found other things we are interested in that we have in common. I am meeting her for the first time in August. Our friendship is newer than older so we have time to cultivate and make a richer friendship.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
Oh I see. Well, I hope you are able to cultivate a true and lasting friendship with her. It is a great thing when you can have a friend who knows what you are going through, but who you also connect with on other levels. I feel lucky to have a friend with Lyme like that. I hope yr meeting in August goes well. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
I wish I could find a friend who is a mother and has Lyme. How do you go from a full life (family, work, social, able to plan and do everything) to living with Lyme. I am sitting inside today on a beautiful day unable to do anything or have anyone understand me. All I could do is cry.
Posts: 4 | From Fairfax, Virginia | Registered: Jul 2012
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posted
Sehat, I am not a mother but I can relate to going from a full life to living with Lyme and coinfections. I was a crazy busy person before getting really sick these past few years. I was constantly working and having fun and was the proverbial life of the party. I literally was on the go all the time. And I loved it.
It is so hard to have gone from that to the diminished existence I have now. I think we need to remind ourselves constantly that this is not going to be for the rest of our lives. Things are awful now, but they do have a chance of significantly improving.
I cry a lot too. I am at the point now where I avoid mirrors as much as possible because I don't want to look at how diminished I have become. I still have a lot of things that interest me though, like reading, music, art and astronomy.
Sometimes hobbies can be a lifesaver when you are as ill as we are. I really hope things improve soon. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
It's interesting to see how many of the STRONG, GO-GETTERS, Did much for others, A personality type...are so sick...
Did we just crash,, does that make us more ill now?
I too am basically on my own with this except for a very few...Tell ya what,, when I was running a business, helping people here and other countries etc...People all over the place...
The sicker I got ,as time went by, the fewer that stuck around.
They don't see it, don't get it and are tired of hearing it.. I pray to God that when I'm well, I reach out ..
This middle of the night stuff doesn't help either...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Nonna, I don't think its our personalities that makes us more ill now, but I do think that for people like myself who were so incredibly vibrant and active, it is terribly difficult to now be stuck in a body that is falling apart.
I am not on my own thankfully, but there are definitely only a handful of people that I feel really "get it" and I pretty much avoid the others right now that don't. I hope things improve for all of us soon. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
Chastain, my husband and I are just like you. We don't get close to people easily, but we are as loyal as the day is long to the ones we call friends. We are opposites in our personalities, but we are the same in how we consider who we allow to get close to us.
You are right, the active vibrant people have a hard time when they try to put that active life on the shelf indefinitely. We put on that stoic face for a while and crash in private. No one knows how long we will have to do any of this. Boy does that make it hard, no control!
My husband has Lyme too with different symptoms so he doesn't know what I deal with. He is a fatigue person and I am a pain person. I was the active person who ran circles around everyone.
All I can say is try to find something that makes you laugh now and then. My dogs keep me going. When I am in dire trouble (don't laugh), I watch Christmas movies. It doesn't fix anything, but I might get through that particular day doing that. That is the goal, to make it through one more day hoping that we will be better the next day.
Your interests sound good, and all you can do is focus on them when times get rough and hope to have enough energy to fight for one more day. Laugh as much as you can. It really is the best medicine.
Prayers going your way!
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Faithful, I NEEDED to read a post like that today. Thank you so much. You and yr husband are def the same as me personality wise. I have very few people I truly care about but the ones I do, I would do anything for.
You are also so spot on about how you can be so stoic in front of people but then crash when you are alone. I go to work and I see friends and I date men and then I come home and I cry myself to sleep at night with how awful I feel and how terribly difficult it is to just get through a day.
I agree, hobbies and things that make you laugh are so important. I really cannot thank you enough again for yr post. It meant a lot. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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