Anyone else feel like a freak!

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springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 12/2/2009 7:45 PM (GMT -6)   
Anyone else feel like lyme isn't a real disease? It has literally taken over my life.  I hardly ever feel "normal."  At least now that I am diagnosed I feel like I have an excuse but I am so sick of feeling like a freak.  I just want to do what I used to do.  All my friends  talk of going to the gym, going out to the bars, etc. etc.  I guess I shouldn't complain, things could be worse.  You certainly learn to realize how people with disabilities live, struggling everyday, never having a normal day.  It has thrown me for a loop.  I just can't get a handle on it.  I go to work everyday and can't wait to get into the safe boundaries of my home where I can be tired, exhausted without worrying about what people think.  It's so hard to convey that I never feel like me.  I guess people get sick of hearing about it.  I know I do. 

Lovelabs
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Date Joined Jun 2009
Total Posts : 367
   Posted 12/2/2009 8:56 PM (GMT -6)   
I think that is the hardest part of this disease. I have a friend that was complaining about her once a month osteoporosis medication. She said it is a pain because she can't eat for an hour after she takes it. Remember this happens just once a month. I said..."welcome to my world, but it's everyday, 3 times a day, for the past 1 and a half years! People have no idea what it is like for us. I never feel normal. I look normal unless I am having a really bad day but this disease messes with your head. My mind is always spinning...Lyme Lyme Lyme!!!! It has changed who I am and not for the better! I hope better days are ahead for you!

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 12/2/2009 8:58 PM (GMT -6)   
Thank you so much. This board has really helped me keep my sanity. I get sick of complaining but really never feel normal. Then feel guilty for not counting my blessings. I have found keeping busy is best so that's what I hope to do. Until of course a bad week sets in then it's looking like a nutzo again. You are on antibiotics for 1 and a half years. How long do you think you had before they found? Thanks again.

Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 12/2/2009 9:16 PM (GMT -6)   
springsjean,

I can't remember now who wrote a month or so ago "I just want to be normal!" How often those words have echoed in my mind since then. It's heartbreaking to contemplate how different my life would be, how differently I would have faced the opportunities presented to me, had I not been continuously struggling with undiagnosed medical problems. Now that I know what it is, there is some comfort in the knowledge that it wasn't ME. I've tried before to express that sentiment, and can't seem to get it right. But I don't think I will ever forget the feeling, when I found out I had Lyme, of an immediate shift in self concept. I wasn't weak. I wasn't a hypochondriac. I didn't have a genetically inferior body. I wasn't sickly. Instead I understood that I was strong for having done as well as I did for so long when my body was infected with Lyme (and as it turns out bartonella and babesia too). I still struggle through each day with the "pain du joir" and I still long to be healthy and robust and pain-free like I assume most other people are, but at least I'm not taking it on as "ME" anymore. And, as you say, there are a lot of people, people like us but with other issues, who struggle everyday too. At least we can cling to the hope that someday we will be well, or at least better. Lots of people can't even do that. Maybe the people in our lives get sick of hearing about it - though I try not to make it an issue. But here in Lymeland, we can talk about it all we want and know that the other people who are reading it understand. That's really wonderful.

Take care - Rose
I have Lyme; it doesn't have me.


Lovelabs
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Date Joined Jun 2009
Total Posts : 367
   Posted 12/2/2009 9:32 PM (GMT -6)   
Springsjean-
I was misdiagnosed early on so I went 16 months before I had proper treatment. I think that is why most of us feel so "not normal" at times. Months of doctors appts (from so called repected physicians),telling us we're fine etc...to finally becoming so sick we can't think straight...to eventually being under the care of an LLMD... With a long road ahead of us...no wonder we don't feel normal. Bad enough to have it but most go months or years trying to figure it all out. That much thinking and feeling lousy is enough to make anyone feel less than normal.
It's like your living in the twilight zone! I kind of feel like an actress most days. I don't talk about it much then I walk in my door and I crash. Best feeling in the world!
Being home is a huge comfort to me. When I am with friends etc. I feel like I am half there. My mind is usually dreaming of my bed!

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/2/2009 10:57 PM (GMT -6)   
Rose,

I think that was me that posted about wanting to be "normal" again. I hope I didn't cause any bad feelings when I said that. If so, I am so sorry.

I too love the comfort of my home. I actually got out today, went get mine and my girls flu shot, then went shopping for a baby gift. Boy did that feel good! But, I still loved being back home ,slipping into my pajamas and plopping on my sofa.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 12/2/2009 11:10 PM (GMT -6)   
I've always loved to be home -before I got really ill. I can only take so much of staying indoors though. Counting blessings really does help me to keep things in a little better perspective!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/2/2009 11:34 PM (GMT -6)   
Oh my gosh, no, CG, your words gave focus to the feelings I was having. Nothing bad about that at all. I think all of us share the appreciation of knowing that on this forum there are other people who understand how we feel. I know when I see how I feel in someone else's post it is gratifying not only because I feel affirmed, but also because I don't feel so alone. Like Lovelabs said above, having undiagnosed Lyme disease really is like living in the Twilight Zone. All of these weird and often painful symptoms, test results normal, we LOOK normal and most of the time are able to plow through the public part of our day without attracting attention to ourselves only to fall into an exhausted heap the minute we step into our homes. That was something I would hide from most people. The people with whom I worked last year had no idea. Given how I felt, I think I deserve an academy award nomination for pulling it off. So, if it was you, CG, thank you very much for giving me a phrase upon which I could hang what was previously an undefined, amorphous, uncomfortable feeling. It's a lot more palatable now that it has linguistic boundaries.

Rose
I have Lyme; it doesn't have me.


JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 12/3/2009 6:19 AM (GMT -6)   
I feel like I didn't sign up for this! I mean I was having alot of pain for a few months, went to the Doc and she said Lupus.. did blood work and got a call saying Lyme. She didn't even tell me she was testing for it! So in one way I'm lucky my doc took the initiative (most likely because the county I live in has the highest rate of Lyme in PA) regardless... I felt like, Lyme? me? noooo, I have things to do, people to take care of... I do feel like an outsider when I am places. My Aunt has Lyme but when she is sick she stays home, so no one in the family even knows, unlike me, I still go to all the events, I'm just quiet and my family understands I'm not the same person. I try not to get consumed by Lyme. I was.. but I'm not now. We are victims of Lyme and letting it consume us, which is so easy, is letting it win, and I won't let it. I like to go out and pretend I'm normal.

Did anyone read that article that said that Lymies was just a cult. ! Maybe we should all move to the same town and prove him right. LOL Could you imagine if we all were in the same town? LOL Oh wait, nothing would probably get done. LOL There would be alot of pharmacies and vitamin stores I can tell you that! LOL
“You must be the change you wish to see in the world.” -Gandhi

http://lymeactually.blogspot.com/


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 7:38 AM (GMT -6)   
Rose,

Okay good! I thought I had upset you with a negative post.


Jenn,

You're so lucky that you can still push yourself to get out. I "used" to be like that until my body completely shut down. Now, my mind still wants to do things, and sometimes I really still think I can, but my body reminds me that NO....I can't! It's frustrating! I guess it's a good thing that my mind is still pushing me though. Now, some days...like one or two out of the month, I feel normal again...like I've never been sick. This disease is weird but I'm glad it gives me a few good days.

Keep pushing yourself!!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 12/3/2009 10:11 AM (GMT -6)   
So so sorry and SCARY to hear that. Part of the mental thing with lyme I think is not knowing if you will get worse or ever get better. Did you get progressively worse, are you still in treatment and how long did you have before you were diagnosed and treated?

I am determined to beat it and someday hope to be some kind of advocate for lyme but right now I feel I can't extend myself, just getting to work and taking care of my family is a challenge enough. However, if you look at me, I'M FINE!!

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 12/3/2009 11:20 AM (GMT -6)   
I remember saying to myself "Whew...it is only Lyme", what did I know, how was I suppose to know. The media doesn't educate the public properly. Like many I had this idea that Lyme is treated with antibiotics for 30 days and then you are fine. HA! that is bull crap. I don't know when I was bitten, but looking back I believe I have had this longer than expected. Now I'm trying to pick up the pieces to get back to being normal.

Well I asked myself what is normal? I just don't know anymore...it seems like a distant memory to me. So yes, I completely understand what it feels like to be a freak. Everything I do needs to be monitored from eating to sleeeping. And to make matters worse I'm lucky enough to have sensitivities...so I have to be extremely careful on what I take.

Like everyone here, I'm frustrated, scared, and lonely. I want so badly for this nightmare to be behind me. But instead I feel like I'm standing on a cliff and at any moment the rocks under my feet are going to crumble and I'm going to plummet downwards.

Enough from me...thanks for reading.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 12/3/2009 11:25 AM (GMT -6)   
Makes you wonder how many people out there have it that don't know what it is and are told they are crazy or have something else. I know of a number of people in my area which is high risk for lyme with MS and feel like screaming at them to make sure they have it. But then again, who am I other than a lyme nut, if you know what I mean.

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 12/3/2009 11:32 AM (GMT -6)   
springsjean -

I do understand what you mean...And I try to educate whoever will listen to me. I'm determined to get the message out and I will at some point make a difference to someone.

I hate that Lyme is ignored...especially, since it makes you feel so darn sick. It kicks your butt quickly, and hides itself like it is invisible. Such a smart germ...

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 12/3/2009 12:40 PM (GMT -6)   
My best friend (like a sister really) told me after I had driven the 2 hour drive to visit, that I didn't look "fresh." It look so much for me to make that drive and I was in such pain afterwards - but all I really remember was her "fresh" comment. I hadn't had a manicure - I couldn't afford one and didn't feel like doing my nails. I looked at my nails on Thanksgiving and quickly called and told her I couldn't come. She stopped speaking to me.
 
I make myself go to work everyday - never leave my apartment unless I have to - I need to rest on the weekends to get strength to be able to work - no one understands. She has fibermyalga (sp?) so you think she'd "get it" - but she doesn't. Now I'm not going to have the money to see my Lyme professional this month. I feel like crying I'm so depressed.
 
Victoria

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 12/3/2009 12:44 PM (GMT -6)   
Hang in there. I now get the "one day at a time" thing that alcoholics deal with. It is a daily struggle, in a different way of course. When I have a good day, I take it and run with it and am sick of making excuses for bad days. Take me as I come or RUN!

Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 12/3/2009 1:44 PM (GMT -6)   
I never felt like much of a freak until I went canoeing this summer with family and friends.

I was always the life of the river, jumping out of my canoe to tip over a buddy and hop back in
my canoe and paddle like crazy to save my canoe from being tipped. Taking my oar and splashing
others, racing them to the next stop, just silly goof off stuff.

But this time was much different. I just sat in the front of the canoe and hung on, scared that if the canoe
did tip over would I be able to save myself and help gather all gear floating down river. I got soaked needless
to say because I was a target and they all knew I was weak and couldnt get them back.

It made me realize that I was way different then before.

Hopefully next year I can be normal again and soak their butts. LOL!
 


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/3/2009 5:53 PM (GMT -6)   
Victoria,

Your experience with your friend is so sad. As you say, since she has fibromyalgia (or maybe it really is Lyme) she should have some clue as to how difficult it is to attend to every last detail when you're in a lot of pain and just struggling to get through the day. You and what you bring to the relationship are a lot more important than your fingernails. It sounds like maybe your friend was having a bad day on that first visit, and took your cancellation on Thanksgiving personally. When I first got sick with IC in 2007, I found out pretty quickly who were my true friends and who were what used to be referred to as "fair weather friends." Being this sick, especially when confronting the demands of a full-time job, we need friends who will support us. I hope things will turn around for your friendship.

Will they work with you at the LLMD's office? You've been going there for quite awhile. Maybe they will be flexible about payments.

Rose
I have Lyme; it doesn't have me.


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 12/4/2009 6:09 AM (GMT -6)   
One thing I have learned is things never return to normal. What is normal is your life gets redefined. Many people in your life just don't hang around when you are sick. Even people who you perceived before as good friends or maybe close family. Then you get better and wake up but you do not wake up to the same world you left. It may sound strange, but as hard as it is to be sick, there are things hard about feeling better as well.

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/5/2009 2:14 PM (GMT -6)   
For JenInPA - they were also looking at Lupus for me. Believe me, you DON'T want Lupus. As bad as Lyme's is/can be, Lupus is worse. I was thrilled (and still am) that I have Lyme's and not Lupus. I have a family member who had it - trust me, this is a cakewalk.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 12/5/2009 7:01 PM (GMT -6)   
Tala3 said...
For JenInPA - they were also looking at Lupus for me. Believe me, you DON'T want Lupus. As bad as Lyme's is/can be, Lupus is worse. I was thrilled (and still am) that I have Lyme's and not Lupus. I have a family member who had it - trust me, this is a cakewalk.


My doctor thought I also Had Lupus early on. I was thrilled to find out much later it was Lyme and co infections. I figured a round of antibiotics and I'll be as good as new. That was four years ago, I'm still not better.....not even close!!! Lupus is a terrible disease, but trust me Lyme is very devastating, and should not be taken lightly.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/6/2009 9:01 AM (GMT -6)   
Yes I feel like a freak, but I've always felt like a freak - haha!
Never doubt that a small group of thoughtful, committed citizens can change the world... it's the only thing that ever has.-Margaret Meade

TOguy
Regular Member


Date Joined Jan 2007
Total Posts : 193
   Posted 12/7/2009 6:13 PM (GMT -6)   
springsjean, I am personal fitness trainer, did many competitions and was at the prime of my life , very out going, vacations, partys,etc. , i was 5' 10" and 220 pounds of pure muscle, i still keep fit ,but cannot lift weights yet, i feel like a freak when friends ask me to come out , lets go party your fine, i always have to come up with an excuses , i wake up in the mornings cursing at times and then take a deep breath and try to regroup and say to myself lets battle this just like i did in competitions we can do it!, the hardest part is i have been treating for 3yrs and still not well and feel always off and a bit strange, weak , dizzy at times, just like when u have the flu and its always there, i hate it and it has devastated my life and who i am, im not the same guy, not at all! and i hope one day i can be , hang in there
 
 
     Respectfully,JB


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/7/2009 10:35 PM (GMT -6)   
Cheezhead,
Don't worry, I'm not taking Lyme's lightly, but at least there is HOPE with Lyme's, where there is nothing but surgeries, no return (or even improvement) of mental functioning, major organ failure, and in the case of my relative sudden rupture of internal organ and death with Lupus...and the meds cause even more problems!
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