Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Forgive me as I am herxing, and overly emotional right now.
But, when you get better from Lyme, how do you deal with the scars that it has left? How do you deal with what it did to your life, how it terrorized your body, mind and soul??
How do you put it in the past, or can you never put it in the past? I know I will always fear that it's lurking.
I wanted to become a veterinarian in highschool...then Lyme hit....I promised myself if I ever got better I would become a doctor (preferably Naturopathic) to help anyone else who had this horrible 'thing' that I had, no doctors could properly diagnose me.
I did pre-med for 2 years, then 'it' came back...I wasn't 100% before, but probably 90%...I switched majors to nursing because I didn't know how much time I had...how long it would be before I was engulfed in the Lyme aura of feeling like I was dying. Only I had a 2 year old son and a husband and I was pregnant with our 2nd child. I felt the panic rise, my body started feeling like it wasn't my own. Something was wrong, the thing that had happened to me years ago, but there was no answer
It took my dream of becoming a vet. It's taken too many dreams to count. My anxiety was so bad when I had my second daughter that it was difficult to bond with her because I just worried about dying every second. Something that should have been such a joyful time, wasn't. I just hoped I wouldn't have a panic attack during labor...most people worry about the pain, if only I'd had that luxury.
I remember looking at her tiny face and knowing she was my daughter, but there wasn't the joy of a birth. I was relieved that she and I were both alive, but I still felt that I would die during her infant hood due to whatever it was that had come back in my body.
There are SO many things I could list, but I won't...and I know this disease has destroyed SO many people's lives, not only my own.
I am so tired of this, so tired of dealing with it, I just want to be a normal 30 year old woman. I just want to do normal things and enjoy things that normal people do. I don't know what it's like to be normal every day, but in the past few months, I've had seconds, minutes and even hours where I felt normal again. It was simply amazing and it gives me an incredible amount of hope.
Granted, I am MUCH better than I was one year ago, no question and I truly believe I will be very close to 100% next spring if I can keep improving like I have been...I'm just feeling so drained tonight, spent the last 2 days with severe pain in the lower half of my body, sleeping was painful because my legs just hurt so much.
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Ocean I was saying allmost the exact thing the other day.
If i had only not went hiking at Mamoth Cave National park that day I got the ticks.
We never know how our lives may have been if we didn't get lyme.
Maybe better but we don't know that.
If i didn't have lyme would i have been killed in a mountain climbing accident?
Or a car accident?
Mabe this life is better than what could have happened.
We just don't know!!!
We can't think about what would have been,only do the best we can with what we still have.
And be proud of it!!!
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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bettyg
Unregistered
posted
ocean, i hear you my friend.
maddog had wonderful comments and explanations; so i would have used also.
i've been sick for 40 yrs; don't remember the NORMAL good years at all.
but i LOVE the person i have become now...stronger, vocal vs. the quiet mouse i once was, a leader, a political activist not letting the establishment get by with things, COMPASSIONATE, live for the moment, and the last .... my glass is always HALF FULL; not empty!
ocean, when you come to that point in your life, you'll be thrilled that you overcame this god-awful disease that you'll count your blessings and go on to greener pastures with the subconscious remembering these bad years.
here's to a life WITHOUT lyme and all co-infections for QUALITY OF LIFE FOR ALL.
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posted
I get very severe neuropsychiatric issues (especially while herxing) just like yourself.
The feelings of terror, the feeling of doom, the hopelessness. I've had a near death experience (or so it seemed) too many times now.
The condition is labeled as psychological disorder, but it feels like a physical disorder.
Now while I strongly disagree that this is a psychological disorder when it comes to diseases like Lyme, these intense feelings can take a psychological toll, sending you into a downward spiral. After my first herx on doxycycline, I felt like I was dying for about 2 weeks. I went to the E.R., but there was nothing they could do to help me. I stopped antibiotics for three weeks in attempt to recover. I was given tranquilizers (Klonopin and Ativan), which helped me, but didn't erase the feeling that I was dying. During this time frame, I ended up seeing a neurologist, pyschiatrist, and psychologist. I was scared; very scared.
I moved in with my parents, and ended up sleeping on the floor of their room. I didn't speak much during this period because I felt so scared, and felt completely detached from myself. I couldn't be alone, and times that I was, I called the ambulance. I have had Supraventricular Tachycardia and heart arrhythmias too, which of course makes panic and anxiety worse. My parents knew I was very sick, but at the same time, they were frustrated with me. I invaded their personal space (their room), as I was too terrified to be anywhere else. I am 23 years old, but I was not able to sleep without the presence of my parents. They wanted to admit me to a hospital, and I wanted to be in a hospital, but since everything checked out ok, I had to stay home. The only place that could admit me would be a psychiatric center about 45 minutes away. I felt sure I was dying, and actually wanted my parents to drive me there so I could be admitted.
Now, as I have found out, it takes time to get over these traumatic life experiences. I've only been on treatment for about 1.25 months (if you include the first time I herxed and went off abx), but I have made tremendous improvement already. I still don't feel normal, and I am still on benzodiazepine drugs to keep panic under control, but atleast I am in control and can function and participate in activities that aren't too strenuous. I will have days where I am not doing as well, and I will think, "Will I ever get better." I have to think back, and realize that even though everything isn't perfect, I have made a tremendous amount of progress. As hard as it is, and even though I don't have complete control over what my body does sometimes, I realized that I just have to stay positive, or else I will be stuck in a rut and deteriorate.
I know the exact feeling that describe when you think you are dying. These feelings are now going away for me (though I am on meds still), but when they come, they feel way to real. You can't convince yourself you aren't dying, because in reality, it feels like you are. The best thing you can do when in that state is just be calm, do some deep breathing if you can, and tell yourself that even though these feelings are dreadful, they will pass, and you will be fine. This sounds like simple advice, but when I get in those states, I have trouble following my own advice. People who have never experienced these feelings don't understand how powerful they are.
Speaking about putting it in the past, I am trying to figure out how to do that myself. I'm not as scared since I haven't had these attacks lately, but the fear is still there. If you can keep your mind off yourself and keep yourself busy with activities (even small), that may be the best way of putting it in the past. Self-reflecting can be good at times, but it's not healthy to be looking at yourself under a microscope all the time. These are some techniques my therapist taught me, and while I am not good at them yet, I am trying to practice.
Are you being treated for Bartonella as well? Because these feelings can be caused by a Bartonella-like organism.
The best advice I can give is to stay positive, and avoid isolating yourself from friends and activities. You will continue to get better.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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We can't control what is dealt to us in this life. But we CAN control what we do with that.
You are doing everything possible to get well. And I believe you WILL get well and will look back at all of this as a learning experience.
You will be stronger.
You will be happy.
You will be more appreciative than most.
You will be healthy.
O.k. You can slap me now.
I have had the exact same feelings as you. My sister(who also has lyme) and I were just talking about this last night. We've been robbed of "normal" experiences, "normal" attitudes, basically of living a "normal" life. We're both sick and afraid.
It stinks. But I have to accept that MY "normal" right now is dealing with lyme and hope that some day(soon please) my "normal" will be feeling well and not waking up every morning thinking about lyme and how awful I feel and not feeling afraid.
I'm rambling. *ducks more slaps*
We'll get there, Ocean. And sometimes things are meant to be. Maybe those dreams you had would not have worked out as well as you had planned. Maybe there is a good reason they did not happen. Maybe you are EXACTLY where you are meant to be right now.
Posts: 423 | From Upstate NY | Registered: May 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Ocean,
I so can relate, as you well know. I have also been having feelings of loss, grief, fear etc.. In my opinion, these things are healthy and perfectly normal.
Reflection is good. It gets all of that baggage out in the open and sometimes, sometimes, we are able to leave the bags behind. If we bury these bags (emotions, grief, fear) it only makes the situation worse as those feelings will continue to bubble beneath the surface.
So, to me, revealing and aknowledging that you have these feelings is cathartic, a part of your healing, and necessary in order to be truly well.
You will heal, emotionally and physically. the beauty of your essense shines so brightly...soon you will be able to accomplish new dreams that will be so much sweeter given all that you have come through...
You are a survivor and capable of anything. It is never too late to fulfill a dream.....
big hugs, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
You will get better being so young you may get right back up to what you were.. I know from experiance i was better for 6 years. Im 62 so its hard to tell where lyme leaves off and age is effecting my life. So my bar for what i use to do is lowered not like i was before lyme. However im getting old and some things wont be the same. I didn't seem to get all my stamina back but i have a number of issues health wise. But i didnt want to even talk about lyme i felt it had robbed me of to much of my life.
Live your life the best you can you only have one to live. When you do feel better and you will feel better do all your able to do.
Try not to worry about tommarrow with lyme. If by some chance you have a relaps you will make it through with the strength and courage you have now. We are strong people we have to be to cope with this mess. Even tho we dont feel that way.
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
I really think we need to mourn, to tell the truth about who we are, what we're like, what we want, what we like to do, what we thought we were going to do.
After that, to see what part of this we can still have, in some way, maybe a modified way, in order to satisfy that aspect of us.
Then to take a look at how we've changed and done something new and different. Some of that is strong stuff. We've all had to become stronger people. And as a result, maybe have gone some different directions, but still utilizing our awareness, skills, connections.
And for me the experience has changed me to be more aware of others who have various health challenges too, not necessarily this one.
Then to realize that we know something that so many others don't yet know about: these illnesses. We have the capacity to recognize them in those who are ill and don't understand. We have the capacity to alert the well public. Etc. This part I call being a Lymebassador, to save lives.
Just about in that order...
Posts: 13116 | From San Francisco | Registered: May 2006
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Dearest Ocean,
I have been in remission for one year now (no abx). I still eat healthily, exercise, take the important supplements, etc but, I must admit that I am suffering from Post Traumatic Stress Disorder.
I was declared in remission 5-years ago but then 2-years ago, they figured out that they'd missed my Bartonella and my biotoxin gene.
I bounced back brilliantly after the first horrifying round of treatment beginning 2002 but, sadly, I cannot say the same now.
This disease has interrupted my life SO many times (knowing and not knowing what the hell it was)...(I'm a lymie baby) that it's finally taken the wind out of my sails.
I am in therpy, taking anti-depressants and am actually changing as a person. How can you not after all we've been through? My parents' are also going through a painful divorce (as many of you know) after 45-years of marriage and it feels like my main anchor is gone (I'm not married.)
I am one of those people that HAS to believe this happened for a reason and that this is a time of self-reflection and grieving of the things and time I have lost due to this disease WAS FOR A REASON.
I know this is not permanent but I wouldn't be human if I just jumped right back into real life...it's so scary!
Don't get me wrong, I feel BLESSED beyond words that I am in remission and my physical health is great but we all know that mental health is important too, and that's where I'm struggling.
Honestly, I think, BEFORE, my second bout with these TBD's I was on a train going nowhere fast. I went back to all my old ways; partying, dating horrific men, smoking cigarettes, taking my health for granted.
This time, NO WAY. It's like a higher power slammed my head against the wall because I didn't learn the lesson the first time. My purpose on this Earth is NOT to be a partying maniac but to be a sensitive, loving and giving soul. My authentic self is finally coming out but one must grieve the "faux" personality that got you through the years of hell and ambiguity of the invisible chain and ball called Lyme around your ankle.
I wil keep you posted because, even though it has been hard, I feel like I'm almost ready to come out of a cocoon as a new and beautiful butterfly...the one God wanted me to be.
I hope that helps or at least comforts you to know that I/we all understand. Only people who have gone through this horror understand and I will never abandon this wonderful site where people supported me like no others.
posted
My husband calls it "post lyme stress disorder"
That includes the fears of: going outside, having unprotected sex, having pets, your kids having any little discomfort that could be lyme, etc.
It also includes anger at: the medical establishment, specific doctors, your family that thinks you're a hypocondriac, the government, losing a part of your life, lost income, etc.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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bettyg
Unregistered
posted
boy, you all have had some excellent examples and feelings spoken from the heart; well done explaining yourselves.
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Yeah, great job, everyone. Tears in my eyes.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thank you ALL so so much!!!! I know you can all relate...and you are right in that I will get better, I just know it...I've had a year here and there that was pretty good, and I feel fortunate that I am only 30 and know what is wrong..could have gone 20 more years and not have known!
I can relate to sleeping in the parent's bedroom. My mom had to sleep with me almost every night for about 5 months my last year in high school. I didn't know I was having air hunger, but I felt like I couldn't breathe and I didn't want to die alone. So my mom slept with me.
It's been such a huge nightmare and Lyme patients are among the kindest people I have ever encountered and I thank you for your words, insights and stories...I will print all of your replies and read them if I am feeling down. I was quite emotional 2 days ago as well, I hope that this is a good thing, getting all that out, maybe getting better!
I am so grateful to have friends like you, it means a lot...
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