So I'm looking to see if there is anyone who has or has had the feelings I am now experiencing. Don't think I can talk to anyone who doesn't understand being sick for so long!
I have seen some progress in my treatment, and am able to do some things that I haven't been able to do in years.
Not near where I need to be yet, but I have started to imagine that one day maybe I CAN go back to work, and I CAN go back to school, and I CAN live without completely depending on someone else to take care of me.
Those thoughts were exciting to me at first (haven't thought that way in years!), but now the thought of getting well scares me. Am I crazy?
It's not re-entering the world that frightens me, I am just so scared of doing so and then RELAPSING!
Now that I am improving I am remembering what it was like when I first got sick. How fast it happened ... How quickly my active life turned into me being this blob that would feel so accomplished if I was just able to shower.
I said to someone (who had no chronic illness) a while back that I would rather never get well than to get well for a year or two and then get sick again. They reacted like I was crazy. Did they think I meant I enjoyed being sick? (surely not!)
I can't imagine gaining the life I want and miss back, and then losing it again.
Maybe I'm just well enough now that for the first time I am realizing what I've gone through. Or I am just now getting to mourn ... everything?
I do appreciate each symptom that has improved, and each time I am able to do something that I couldn't do before.
I feel really guilty for feeling this way. I should just be thankful..?
I feel SO ALONE with this being foremost in my mind. Not being able to talk out my fears.. feeling like no one could understand.
Pouring out my heart with tears..
Sorry for length, can't pour out my heart without it being long. I have a very big heart! Posted by James1979 (Member # 31926) on :
I think this is a very natural fear that you have. But that doesn't mean that it is good.
I think a better viewpoint would be to treat every day like it's your last, and then you won't worry so much about the future.
Are you sick today, and the only thing you could do all day was take a shower? Thank God!
Are you healthy today, and you are able to do more activities? Thank God!
Don't worry about tomorrow.
Posted by Susie R (Member # 30780) on :
I understand completely. The loss of a healthy life was devastating; you don't want to go through the loss and disappointment again. You are saying the roller coaster of hope and disappointment feels more painful than just dealing with being sick.
Susie
Posted by momindeep (Member # 7618) on :
Post traumatic stress disorder...maybe a little bit? I feel this way about many things and I am the caretaker of a daughter who has/had chronic Lyme. Although she is well now... after a decade of taking care of a ill child with a very scary, misunderstood illness, I have yet to reach a feeling of total calm...although I am working on it and learning to put things in proper perspective.
It takes time...it takes logical thought, and for me, it takes the Lord to hold my hand.
Posted by Harmony (Member # 32424) on :
Don't feel alone or guilty; I'm sure we all feel that way more or less at one time or another.
Not sure if my approach would help you. What helps me is the replacement concept:
when I get to worry and be scared and feel like this is just going to be a tease and then "life takes it away from me again", I say to my mind "Thank you for sharing these thoughts.
And now I chose to think something else:
My body is devinely protected and connected until the moment I die.
I am grateful for my perfect healing.
I am in control of my life.
I love you, Harmony, and I accept you and I approve of you and all your decisions.
Only good comes to me and goes out from me.
I am at peace inside.
etc.
YOu can pick whatever thoughts work for you, something that you believe in or may like to believe in.
It has to be really positive and calming and supporting.
It is like a meditation to me and I breathe in and out deeply while I do it.
I think fear and guilt can be very destructive and I try to treat myself to a lot of support to assist my healing instead.
It takes some discipline but the mind is a wonderful thing and it supports your every thought, and the thoughts you can direct with a little effort.
I learned a lot of this from Louise Hay CDs, and my favorite right now is "Feeling Fine" where she speaks one positive thought after another for you to hear and absorb and change your self-talk.
You can get those easily on amazon.com for about 10 bucks.
Not sure this would help you.
It helps me, especially when I don't have someone else there to help calm me down.
Best wishes!
Posted by scorpiogirl (Member # 31907) on :
I so get what you're saying. Basically you have been burnt so badly that you are afraid to celebrate the success in case it's taken away from you again. In another word, you live life while waiting for the other shoe to drop! While it's understandable, it's not healthy!
The thing is people live like they have infinite time on earth. The truth is we can't decide how or when we're going to die, we can only decide how we are going to live. So don't sweat the small stuff and live each moment like it's your last.
I had two important reminders this week. Our children's Pediatrician went to work, passed out at the office, and later died that night from a brain aneurysm. Then my best friend called to tell me she was visiting w/ her sister and spent a wonderful night w/ her shopping eating, etc... The next morning she waited and waited for her sister to wake up but she never did. She died in her sleep. She was 43.
So just take it one moment at a time and be grateful to the Lord for giving you another day!
Posted by glm1111 (Member # 16556) on :
Look into staying on maintenance doses of herbs and other alternatives so you don't relapse. Also consider treating for intestinal parasites. Staying on a maintenance dose of meds or herbs has taken that fear away for me.
Gael
Posted by TF (Member # 14183) on :
Everyone fears relapsing. Everyone.
I believe the best thing you can do to prevent a relapse is to do the Burrascano required exercise program: 1 hour of weight lifting every other day.
My doctor said it is a must if a person is to recover from lyme and not relapse. Another doctor I send people to says the same thing--you must exercise.
It worked for me! In April, it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life.
About 3 years ago, I got bitten again and got a bulls eye rash. Went back to lyme doc and it only took 30 days of meds and that was it. I got to him within a week. I never had any symptoms other than the rash.
So, just get your immune system strong through the exercise program, no smoking and no drinking (or rarely drinking), and you should be fine.
In addition, be very careful about outdoor activities so that you don't get bitten again.
Do these things and you should be fine. I am so happy you are beginning to feel well. It is great to read that! You go, girl !!!
Posted by Harmony (Member # 32424) on :
Thank you so much for your post, Dawn2137 and TF!!
I really needed to hear that, too.
I am not on treatment yet, had EM rash and 21 days of doxy 100mg bid, then terrible sweats and low grade AM fever (Barb or Bart?), and realized it was Lyme for the last 14 years! All the rotating joint pain, muscle aches, nerves cutting off, stiff neck, irritable bowls with incredible pain, now double vision and dyslexia and memory problems/inability to speak and focus....
I have an appointment with an LLMD for September 15 now (the earliest I could get) and I am a little scared of the meds, the Herx, and the prognosis. I am sooo glad to hear someone has gotten over it and symptom free for years!
Thank you for sharing that!
I am still pretty strong and work out (which makes my symptoms better strangely - I almost feel normal when I work out hard) even though I have not gone down a set of stairs forward in years since I am so stiff all over.
I am looking forward to smiling again without feeling my face muscles pull back on me.
Posted by wendihk (Member # 20554) on :
Your worst fear happened to me. I finally saw great improvement after several years of hell. I got rid of my unsupportive (and let's face it) downright mean boyfriend, felt better and found myself in a new relationship.
We were scheduled to go away for a weekend and then out of nowhere I felt like I got hit by a train. I was in tears and we didn't go. He was very supportive although had no comprehension. I wasn't crying because I felt lousy. I was crying because I thought it was permanent.
I rested and took alot of Lymphomyosot (detoxes the liver) and within 3 days felt much better. Every so often this happens but it is so rare and now I don't panic. I made up my mind to make myself well.
Please don't worry, just clean up your life. Eat well, control stress, exercise etc. and you will get better. Without that hope, you never will. Best
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