posted
I've gotten so much better from where I started but I'm pretty sure this scares me... I should be estatic shouldn't I? Feeling good and getting friends back and... But I was sick for so long I don't think I know how to be healthy anymore? All those doctors who told me I was crazy before I got diagnosed with Lyme are still getting to my head. I think I know I was diagnosed but was it a mistake? Did I make myself sick? Was I really crazy and just wanted attention? Now that I'm feeling better and finding I would rather not be it's even backing up the 'I just want attention' thing. Well maybe I'd rather not be sick... I just don't know how to be healthy. I think the healing after dealing with a chronic illness [mine probably just in remission, if I have it at all...] is just as hard as dealing with the chronic illness. I have emotional scars way down deep that definetly need healing. I have trouble trusting people. I'm used to being on my own and having people not want to be around me. But now that I seem better and I'm getting friends again I find myself wishing they werent there at all. Wishing I could be on my own again. I guess I got comfortable with being sick? Any one else feel like this?
-------------------- A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses. --Hippocrates (460 BC - 377 BC)
Lyme Disease diagnosed June 28th 2009. Posts: 6 | From Texas | Registered: May 2009
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janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
Hey, I hear you. had lyme about 6-m months before diagnosis. Now almost a year into treatment starting to feel bettter most days. I feel like there is actually a light at the end of the tunnel. Like you don't know how to act well. When I feel great, looking for reasons why and wondeirng when the ball will fall and fell like hell again.
I'm sure being around me isn't always fun with so many symptoms from the lyme/babesia. I know how you feel. I've been there and just had this conversation with my fiance this weekend. He says he understands and will help me through it.
People at work feel like I'm a hypo and don't believe lyme can cause so much illness etc.
smile,we are getting well. Janice
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Paigey,
Many here have trouble reading large block of type or more than one point per paragraph. So that you get more replies, here your post, with some white space added to ease the eyes: ------------
I've gotten so much better from where I started but I'm pretty sure this scares me...
I should be estatic shouldn't I? Feeling good and getting friends back and... But I was sick for so long I don't think I know how to be healthy anymore?
All those doctors who told me I was crazy before I got diagnosed with Lyme are still getting to my head.
I think I know I was diagnosed but was it a mistake? Did I make myself sick? Was I really crazy and just wanted attention? Now that I'm feeling better and finding I would rather not be it's even backing up the 'I just want attention' thing.
Well maybe I'd rather not be sick ... I just don't know how to be healthy. I think the healing after dealing with a chronic illness [mine probably just in remission, if I have it at all...] is just as hard as dealing with the chronic illness.
I have emotional scars way down deep that definetly need healing. I have trouble trusting people. I'm used to being on my own and having people not want to be around me.
But now that I seem better and I'm getting friends again I find myself wishing they werent there at all. Wishing I could be on my own again. I guess I got comfortable with being sick?
Any one else feel like this?
-------------------- Late Stage Chronic Lyme Disease diagnosed June 28th 2009.
(PaigeyMcPaigers ) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i think what you are experiencing is totally normal. it's hard to trust people when you've seen how they can completely abandon and sometimes turn on you when things get tough. we all feel crazy from time to time because of the horrible accussations others have made. i know for me, i think "how is it possible that i felt SO bad yesterday, but today i feel okay, was it really just in my head?" but then the pain comes back and i am reminded that it is very well far too real! maybe you should see a counselor if your insurance could cover it... i know in the past it really helped me having someone to talk to!
Posts: 220 | From Kansas | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Paigey,
It sounds like you are not quite there yet but, in some ways - in addition to feeling better physically - you have become more authentic and don't want to be around those who doubted you.
Maybe you see your friends' activities as less than important after battling for your life
or maybe you are not as much in remission as you think. Not wanting to take any success away from you but the body takes a long time to heal. You were only dx about a year ago and then at the late stage.
My guess is that your nervous systems and endocrine systems can't handle the degree of stimulation - or the kind of activities - of your friends.
You may prefer quieter activities for now - and you may have found your true self and found that the real you just doesn't want to pick up the same life you had.
But, here the pearl in the sand: You get to choose some of this. As to what your obligations at home or school involve, well, we all have our chores. But, with whatever other energy you have, you can design a life, a routine, hobbies, studies, etc. that nurture you, not wear you down.
Yes, trust issues are huge and I'm very quick to drop those who just didn't get on board. However, remember that they have no way to really know what it's been like for you. Even with the ups and downs of energy, most people just can't relate. Add to that the likely sensitivities with hearing and vision - and balance - or smells - and you have been in a whole different world.
Your friends are likely glad to have you back but you've changed. It may be best to spend short amounts of time with them one on one or with just two at at time, doing things that nurture you.
Also, about that trust. Yeah, I hear you there. I will likely never be able to trust any medical person ever again - but I live is a state where none of them are lyme literate. My guess is that you've had your share of bad medical care but also the social aspect of trust around those who have not been lyme literate enough to "get" what you have faced . . . well, that can be huge.
Is there a LL counselor or therapist whom you could have at least 6 sessions? This would help in so many ways, not just your re-entry from lyme but to help you learn a method for making determinations and decisions.
And - to vent your emotions. Emotions don't just go away. They need to be processed and someone who understanding lyme is the only one who can really help with some of this.
Mostly, though, you need distinct professional counseling to get all that stuff out of your mind that says this was your fault or that you were faking? This is a very serious matter and it is best that a trained therapist, one who is LL, helps you see that you are still absorbing ABUSE. It's not easy to stop that so I do hope you can find a good counselor. Sadly, nothing about lyme is made up. It's very real and you need to give yourself respect about the courage you had when facing such difficulty.
And, on the practical side, be sure to keep up healthy eating, avoid alcohol and artificial junk (even a trace). Adrenals supplements might help your endurance but, still, rest if you feel the need. It's not about being either sick or well, terms and labels aside -- in quiet, listen to your body.
You might also enjoy finding a good Tai Chi or Restorative Yoga group. Maybe a drumming group or some other singing or musical group. Find your passion.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It's totally normal. Be patient with yourself. It takes time to adjust to being well, and trusting that you are well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I've had similar feelings, and relate to the above comment that after being sick with this I feel more "authentic." My friendships and relationships have changed along with certain personality traits.
Being chronically ill is a life-altering event, and adjusting to feeling better is all part of recovery.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I can totally relate!
I feel that my lyme symptoms have improved for me the last few months. I'm not as fatigued anymore and the pain is improving, and most of my other symptoms are way better; but my mental state has been going down the tubes. And that seems so silly. I should be feeling better mentally......right??? Very confusing!
Anyway, my LLMD diagnosed me with a mood disorder. I believe it was induced by Lyme in the brain. I know I did not have it before LD.
So just when it seems like I am going to get my life back, I get to deal with a mental disorder. Which by the way I think the majority of lymies end up with some kind of mental issues from dealing with such a horrible chronic illness.
This is what it has been like for me.......one day I will feel so up like everything is going great and going to work out wonderfully; then the next day I am in such a deep depression everything seems hopeless. This is how I live my life lately. Makes me question the whole lyme thing. Yet I had an IGM CDC positive test and logically I was perfectly fine before becoming ill. I was mentally stable and physically healthy. Can't forget about that!
But it does feel like I must not know how to be "well" or "normal" anymore. I have been ill for 4 years non stop, so I know how to be ill. But I have forgotten how to live as a normal person.
But like six says......It takes time to adjust to being well.
I think it will happen gradually. You will gradually do more and more normal things until walah......you are finally more normal.
Not sure we will ever be our old normal. We are new people after everything we have been through. We will never see life the way we saw it before.
This illness does play tricks on your mind, even after you are well. I think because there are never any concrete answers. Nothing to proof you are well except "time".
I think we have to push ourselves into doing some normal activities. The more you repeat anything normal, the more you will begin to feel normal.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Things that we just are not told:
Lyme damages the brain, the liver, the heart, the adrenals, the inner ear/balance system, etc..
It takes time to set that all right again. Even if the infection were able to just take a holiday or when treatment is over (which can take years), there's a lot of repair work to do.
We have to get over this black or white idea that our society has handed us (mostly through TV and movies). We can't just fill a role but our brains do sort of think in those terms of pictures and categories of who - and how - we are supposed to be.
There are many areas of just muddling through. One hour at at time because in ten minutes, everything can change - and change again. And that's very topsy turvy for anyone.
You mentioned having been told you just want attention. My guess is that you VALIDATION. That is far different. You want others to see that what you've been handed is, indeed, a very serious ordeal.
VALIDATION from yourself, too, matters greatly. A good LL counselor can help tremendously with those issues.
And that just takes time, love and nurturing - with the right balance of stimulation and rest. Breathe. Be in the moment. Enjoy what you can. That's real. And that is a valuable skill. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thankyou for all of these replies. They really have helped! I was just down on my self again yesterday but I guess we all have our days.
I used to see this wonderful counselor before I was diagnosed who almost seemed to me to be like a mirror. She would say back to me what I told her with a different take on it and it really helped me learn alot about myself!
I'm just about to call her up and make an appointment schedule because I deffinetly feel I need to discover who I am now.
And Keebler; I never thought about it like that before. It's definetly the validation I want. I want others who aren't sick to see what I'm going through. I want them to know i'm not faking anything. I want them to see how what we all have is real!
Thanks so much to all that responded. It really did give me a different take on some things. I hope you're all doing okay!
-------------------- A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses. --Hippocrates (460 BC - 377 BC)
Lyme Disease diagnosed June 28th 2009. Posts: 6 | From Texas | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Paigey,
As you are 15 and you say you seem to be in remission, it would follow that you would then be (back?) in school in September. Don't know if you missed out this past year but,
can you get a reading list from some of your classes and work on studies over the summer? This would be very important so that you can pace yourself come September. You might even be able to get a paper or project all outlined and start on some research.
If you will be reading any Shakespeare in your English literature classes, get both the books and read along to a CD/audio track - or read while LISTENING to a DVD. Then, only after reading, watch the DVD again.
When I was in high school, I just could not understand the written words of Shakespeare but hearing it on a vinyl record at the same time I read, made all the difference (my teacher suggested that). You can't substitute a movie for the book, though. And you'd need a movie that followed the play verbatim (work for word), not some slick Hollywood flick.
I'm sure your teachers would love to help you out if you just ask. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I'm scared of when I get better that it will happen again. I'm not even near better this time and I'm planning the next. I try, one day at a time, one minute at a time, its just so hard to focus. Feel good. DAY BY DAY.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I still have fear that the Lyme will come back... but I also understand your feelings about "was I really sick?"
I have those thoughts sometimes. I wonder how I could have been so ill and now am doing OK. It really is weird. I was sick off and on most of my life. It all came to a head about 18 yrs ago when I got really bad.
Now I'm happy as a lark and praying to stay well!!
Good luck to you and have a wonderful summer!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I think I am scared to get better. Not sure what to do with myself if I get better!!
Posts: 893 | From Florida | Registered: Dec 2008
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