desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Wondering if anyone else goes through this sort of cyclical cycle.
I can wake up one morning and know its going to be a good day. Almost out of nowhere I feel like my "old self" Yippee..
So yesterday was one of those day and like a kid in a candy store I go for a short run followed by a hike and then errands, lunch out etc. You know...welcome back to the land of the living!
Now today I feel so lymie I can bearly get through the morning/day.
I guess it would seem I am over doing it on my "good" days but gosh.... this lyme thing is working my last nerve both literally and figuratively.
What do you all do on your "good" days to solidify them?
I do have to say that even when I do not over do it on my good days I still have these day to day or week to week ups and downs.
Just looking for some advice or feedback.. Thanks.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
So very normal that it is predictable. I hope you feel better tomorrow and can do more things then!
The ups and downs of Lyme disease are the toughest part!! ( The DOWNS! )
moving to General Support
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
After I posted I realized it was better suited for General Support! Thanks..
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
This is the story of my life! Two days ago I was completely incapacitated--I only got up from bed to go to the bathroom twice and stumble downstairs for some food. Today I feel pretty great and I'm preparing to go for a walk. This disease is the funniest thing!
Posts: 34 | From Pennsylvania | Registered: Dec 2010
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phyl6648
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Member # 28522
posted
Yep, I had one of those days Saturday. Its strange when you wake up you know its going to be a good day. I had been in the house and bed for a week. If lucky I might have one of these days once every two weeks..
But I don't want to waste a minute I want to do the things I haven't been able to do so go for it. There are times I do pace but it doesn't seem to make a difference. I could never run or walk far but just to get out and do a few errands.
Had a good day Saturday but oh today, its like black and white. I honestly don't think we could survive if it wasn't for a good day.. every now and then.
Guess that is why the world don't believe us..
Posts: 1058 | From VA | Registered: Oct 2010
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penguingirl
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Member # 28688
posted
I understand how you feel - it will be ok one moment (or few hours) then bam! you are hit with a wave of pain or dizziness or something that will make you crawl to the couch or bed.
If I wake up on the weekends feeling pretty good, I try to seize the moment as long as it lasts.. ie cleaning the house, chopping veggies, walking outside. It might set me back the next day but I don't care.. at least I did something. I wouldn't say go out and exert yourself too much physically though- do what you know are within the limits.
It's so hard to plan events with friends because you just don't know what kind of day lyme will throw at you.. at least we should try to plan around the full moon!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
This is a timely question as today I am having a great day. I often think okay here we go, back on track,then back in the pit I go.
So how does this work? Do you eventually start stringing more and more good days till you are better?
Posts: 342 | From northern california | Registered: Dec 2010
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posted
^ yes i do believe that you start experiencing more good days than bad days
I am having alot of good days but I also am having some crappy days where I just feel more tired and out of it
And I agree that you can tell if its going to be good or bad right away. its like once you wake up you just know
and then theres the little suprises mid-day. when you feel good then BAM in the middle of the day you just start feeling tired and weird.
its crazy
Posts: 995 | From somewhere out there | Registered: Oct 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Wow..pretty amazing, but not surprising that so many of us experience this! Even within the hour to hour of a day.
I hate that others suffer with this but am also happy to know that I am not alone in this craziness!
It's almost like a teaser of how life should be all the time. For me, I try to use it as motivation to stay positive. That when I feel good it's just a small sampling of whats to come all the time - thats my hope for all of us!
I know that "BAM" feeling in the middle of the day where all of the sudden you feel as if you have been hit by a Mac Truck and have to stop whatever you are doing.
The not being able to make plans..that is such a tough thing for those around us who really do not understand the nature of this condition. I have pretty much stopped making plans cuz I would most times have to cancel last minute...
It just feels so important to find a way - even on those "bad" days - to stay connected to the land of the living in so way. For me that means just driving to my favorite trail head and sitting in the car listening to some James Blunt:)and then go home to crash.
I just miss my life so much and all that went with it..competitive sports, profession, social life, family...I guess it's gonna be a fight to get it back.
Thanks for all the feedback and hope everyone is having an okay day....
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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I can be going along OK, then bam I am back in bed for 2 days.
This can also happen within a day for me. I am functioning, then I need to get home to my icepak fast!
Royally stinks but such is life with lyme.
I agree with you that its hard to have lost so much of your life. I am fighting like crazy to get it back and probably push way to much. I lack patience for sure, but I don't want to give up the things I love. I did give them up for a time, but now I do them anyway. This may be my demise in the end,,,, we will see.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
You sound like me....My life with an ice pack..
Every morning my dear hubby brings me up a cup of Joe (some things I refuse to give up but only 4 oz. of caffiene)with the ice pack. Like..gotta have the ice packs in the freezer ready to go.
Sometimes I think we need to be more like water then fire with this but that just is not my nature:)! Guess there are lessons in everything...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Two days ago I was completely incapacitated--I only got up from bed to go to the bathroom twice and stumble downstairs for some food. Today I feel pretty great and I'm preparing to go for a walk. This disease is the funniest thing!
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