Anyone else feel like a freak!

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,

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

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.

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

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!!

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 -

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...

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!

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

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.

Yes I feel like a freak, but I've always felt like a freak - haha!

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!