I'm trying SO hard to get well... Then I have a few days (I thank God for those days) of feeling better (not 100% but better nontheless) and it goes away.
Whamo! I feel like pure Hell again. So I go through about 45 days of hell to get 3 days of feeling OK.
I guess thats better than 365 days of hell and 0 days of OK.
My doc tells me that this is the standard progression of healing from neuro bb. You get a few days of feeling ok, then you slip back. Each cycle should get shorter and shorter until you start to have more good days than bad.
Does this ring true to the people who are in remission/recovery? I'm looking for confirmation that this isn't a fairytale and I am making progress towards remission.
My other question is... how many of you that have neuro bb are dealing with a bit of depersonalization? I feel like I'm living in a dream world. Everything is fuzzy and nothing is really as concrete as it used to be. I don't seem to grasp the pure weight of life.
Example: My wife is pregant. We went today and had a sonogram. I saw my little baby at only 9 weeks gestation. I'm holding this picture feeling strange. It's real, but doesn't feel real. Does that make sense?
Sigh.......
Posted by sixgoofykids (Member # 11141) on :
It's true. You have more good days and fewer bad days at time goes on.
I got to the point where I was about 95% of normal on most days. We cut my babesia meds too soon, so I am starting back on them and feeling crummy, but I was only six weeks on light babs meds, so hopefully it won't take too long.
Anyway, feeling bad after feeling good is pretty hard. Hang in there, that progression does happen .... you will have more good days than bad.
Congratulations on the baby! I have had some of that depersonalization you describe .... doesn't happen too often anymore ... it gets better with treatment. Plus, I think some of that is normal when you're having a baby anyway ... trust me, it will feel real once the baby is born!
Posted by Tincup (Member # 5829) on :
Of all the things I've been through with Lyme, et al... I think the absolute worst.. and I've been through some bad bad stuff...
Is finally getting a good day.. or part of a good day.. after many many bad ones..
Then sliding backwards.
I don't believe I get more upset, depressed or scared that I will always feel that bad as when that slide backwards happens after a good day.
I want to scream..
THIS IS NOT FAIR!
and...
WILL I ALWAYS BE THIS HORRIBLE?
Then I want to lay down and die because I fear it will always be that bad. It strips my spirit away... and kicks me in the head.
BUT.. it ALWAYS gets better. Always.
I guess I feel it is like a slap in the face to fall backwards after trying so hard and reaching a smidge of happy.
I also stress out searching for the exact reason I got that little bit of good day FINALLY.
What did I do that made me good again for that one day?
What did I do to make me bad again today?
So yes, I know how you feel. I've also seen so many more go through this... and it breaks my heart to see it happen with them too.
After this happening many times over the years.. I've seen the pattern.
One part of a good day. Then two or three bad days hit. Then another part of a good day.. and 2 bad follow it.
Then a full day and a half of good... one or two bad. It waxes and wanes like this until you finally get two good days.. and one bad.
At that point the tide has changed and your good days will be more.. and bad less and less.
So hang in there. If I didn't KNOW it would get better.. I'd have jumped off the tallest bridge LONG ago.
As for the depersonalization...
It too will clear up. But in the meantime.. be sure you don't have a yeast problem.
I've been so bad I eventually saw everything in only in black, grey and white colors. Truely!
I went months with only black/white vision.. and most of the time didn't even realize it as I was "just alive".
Then suddenly there was color again. WOW!!!!
So do know it will get better. OK?
Posted by Michelle M (Member # 7200) on :
Dear Visual -- Tincup really nailed it. It's SO frustrating to slip back when you've had a couple days of feeling better. SO discouraging.
What you have to do is this:
Realize that no matter how inevitable your decline may feel, your doctor in this case is right. Everything in you argues that it can't be so, yet it IS. You almost have to put a kind of blind faith in place, stubbornly telling yourself "This is the disease progression. I will feel better soon. This does not mean I am a treatment failure or that I'm never getting better. This is temporary."
Then, believe it, whether it sounds right or not, because it is right. Remember that your doctor has experience with a bazillion patients upon which to draw; we only have ourselves, and 'ourselves' ain't too reliable as a predictor of treatment success.
Hang in there and believe. Progress is measured in months, not days. Look back to the beginning and realize how far you've come. You're getting there!
Congrats on your new baby. Your first?
Michelle
Posted by DakotasMom01 (Member # 14141) on :
I agree with all the other Posters.
Hang in there, it will get better.
Congrats to you and your wife!!
Posted by tdtid (Member # 10276) on :
As much as I hate to hear all that you are going through, there is a peace in hearing it and all the responses since this is EXACTLY what I'm dealing with now.
You would think that I could be grateful for any good days or even PORTIONS of a good day, but it just seems to make me even more discouraged and upset when things go haywire again.
I knew it was going to be a long process, but dang, I guess I was thinking I could beat the system if I did everything by the diet, all the way from resting more and diet.
I'm sorry you are going through this and obviously, we aren't alone. It's tough.
With that said, great news about the baby. One thing I will say is that even when I was pregnant myself and didn't have lyme, seeing things like the ultra sound STILL felt almost hard to believe. It's amazing so good luck to you, daddy.
Cathy
Posted by Visual Afterimage Man (Member # 10435) on :
Thanks for the well wishes everyone.
Also thanks for the encouraging stories from those who have seen this pattern.
It helps to make it more plausable in my mind, to hear that it's what most people go through on their way to recovery. I KNEW that backslides were in there... I just didn't expect them to happen to ME! Besides, my LLMD thought I would only need about 1 year of treatment before I would be well. Maybe that was before we took a break from Lyme to treat babs and then bart.
Now I'm at 16 months and started to feel like I was doing better. Then SLAP!! Nope.. back to fuzzy brained self.
This is our second child. Our first child is a ball of fire little boy who is almost two. When he was born I wasn't diagnosed with Lyme but was seeing a duck who put me on Paxil and patted me on the back.
Dealing with an infant when I was very sick with Lyme was difficult. I found myself getting very anxious when he would cry or need something. It was too much for me to deal with trying to care for him. I couldn't even care for myself.
Looking back now.. I can do much more of that today. My wife left us for three solid weeks while she went away to training. I was in charge, and we made it! 16 months ago, I couldn't have done that. So yeah... I guess we are making progress.
Just not fast enough for me!
Posted by disturbedme (Member # 12346) on :
I think everyone with lyme has this "roller coaster" ride. I know I do. And it is hard to get used to -- or it's impossible to get used to really.
I can have a few good days then feel terrible and I just cry because I am so sick of it all. It's so nice to have those good days, but then it just feels so unfair, like a joke, to feel bad again.
So we know what you're going through. It will get better though!
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