posted
first off i apologize to all those who would kill to have a 100% day now and again. i also apologize to God for not completely apreciateing what i have all the time.
that being said i have felt like myself with absolutely nothing wrong the last two days. even had more energy than before i got sick easily working two 10 hour days in 95 degree heat. i felt so good the other day i forgot to take my amoxi. the problem i have is that i know a huge crash is coming, just like it always does and ill be sick for weeks on end. i know i should be more grateful for the days i feel good but its hard on me mentally because i gets so excited and so hopeful that this could be the time i dont crash. it really breaks my spirit and causes me to lose almost all hope when i go from feeling so good to feeling so bad. how do others deal with the mind f**king that goes on with lyme and how do you keep your hopes up when you get sick.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I know how you feel, though I haven't hit a 100% day. It's devastating mentally to get beat down over and over and over.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Please pace yourself.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Before I was diagnosed I would have 1 day, sometimes 4 days, and one time it lasted 17 days. I know exactly how you feel. It would take me a few days to get up and walk for fear it would start all over again. I had terrible spasms that would worsen when walking.
Now, after 1 year of treatment, I have been feeling really good for the past three weeks. I am waiting for the crash to come too. I feel like a mental person because when it happens and I feel good I feel like the lyme was all a bad dream.
Then it comes and I am down and out. (In June I was only able to get up 7 days that month.) I get really down, people start to say I did too much or ate something wrong etc...
I know now that it has nothing to do with what I do or don't do. This stuff just comes and I am down. I hate getting my hopes up only to have them smashed to pieces.
This time it is really hard because my daughter is so sick I can't get out and do anything fun. I feel like I am wasting my good days but I don't really have a choice.
Good to hear I am not the only one having this.
Posts: 303 | From green bay, wi | Registered: Mar 2009
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posted
I've felt alive, great for the past FIVE WEEKS! It has taken the combo of cleocin, biaxin and flagyl to kick the curl out of the spirochetes.
I'm not waiting for the crash. I'm livin' it up. Make hay while the sun shines. Enjoy it while it lasts. If you are waiting for the crash, you won't be able to enjoy today as much.
Whoo-hoo for any period of time any of us feels decent!
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Does that make you a FREE WILLY?????
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
My LLMD says that eventually all I'll have are good days. I still haven't had a 100% day yet, but eventually you'll have one good day after another until there aren't any more bad days.
It has to start somewhere. Do try to enjoy your gift of good days, and don't spend the time worrying about the crash. I'm happy for you that you have a little taste of life without Lyme. Good Luck.
Posts: 246 | From south florida | Registered: Mar 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I've never had close to a 100% day, so I just keep in mind what my LLMD said.
There will be little windows of improvement that turn into bigger windows of improvement that eventually turn into continuous improvement.
You are fortunate to be at the stage where you are having bigger windows of improvement.
When you feel bad, hopefully it will be for a shorter time and not as bad as before....then it will be back to having good days.
Be optimistic!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I certainly understand what you're sayin', JunkYard. I know it's not quite the same, but it makes me think of this...
When my daughter was little and I was nursing, she would wake up at night every 2 hours for the first year, then every 3 hours until she was weaned. I was exhausted.
Every once in a while, I would wake up with my husband's alarm and realize she'd slept thru the night and I hadn't been able to appreciate it cause i'd been sleepin' too!
But guess what! She sleeps thru the night every night now and I'm not exhausted anymore (at least not from her).
It's hard to appreciate things if you think they're temporary, but if you could "wake up in the middle of the night" and appreciate that you're getting to "sleep thru it", it would make the night so much sweeter!
Reading this back to myself, it sounds like jibberish to me, so I won't be offended if it sounds that way to you too
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Up until recently, I had never had a 100% day since I got sick 14 months ago.
I just had three 99% days in a row over the weekend, for the first time. I had tons of energy, and spent many hours shopping and cleaning and reorganizing. I didn't do much on the third day.
The great thing was, I didn't crash.
Monday, though, my regular symptoms were back, so I haven't felt great since then.
I have had other times where I have tried to do a little of the things I used to do, maybe one thing for an hour, and it has made me feel worse than usual for the next 3 days.
The roller coaster thing gets very, very, old. I have a good day and think, "Maybe I'm almost well!" And then I have another bad day and think, "Maybe I'm getting nowhere."
I am doing much better mentally since I reached a level of acceptance. This disease is going to have its way with me and take what it wants, and I can't stop it in the short run. But in the long run, I am going to prevail, so what does it matter?
I have often noticed that my Lyme symptoms will come and go with no relationship to anything I do or don't do. For instance, I might sleep 3 hours and feel fine the next day, or sleep 12 and feel fatigued. However, if working a 10-hr. day pushes you to crash harder, then maybe you should work a 5-hr. day and take the next one off or something. Try to use up only half of your amazing energy when you have a good day, and see if it makes any difference in the crash.
It's hard to do that, because whenever it happens to me that I get some energy, I feel like I should make up for lost time and do everything I haven't been able to do, but we have to pace ourselves.
Also accept that any good day(s) is a sign that they are possible, and gradually you will get more of them between the bad ones, until one day the bad ones don't come back any more.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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