posted
OK - I know I already posted a similar topic regarding brain fog, but I was wondering what this disease feels like to others.
Not necessarily specific symptoms, but more how it makes you feel, physically and mentally.
I'll be honest, I am looking for validation for what this disease has done to me...it would be nice to know others are experiencing at least similar things as me...especially if you got better
My biggest fear is that the Lyme caused some sort of irreversible brain damage, 'casue I just feel soooo WRONG inside!
I'll start: I feel like I am in a constant state of shock...if you've ever had a sudden traumatic event happen, you know what I am talking about; kind of a dazed and detached feeling. The detachment feeling is constant for me and makes me feel like I am going crazy.
A lot of the time I feel just totally wrong in every respect. My brain feels like aliens removed it to examine it and put back in wrong.
I am pretty tired most of the time, but I usually have a strange wired feeling that does not allow me to feel restful.
I also have a strange kinda-but-not-really dizzy feeling. I call it feeling wonky.
I feel like the undead. I can walk, talk, even go to work (although I am on thin ice at my job), but I don't feel alive...more like I am half gone already. I go through the motions, but I feel like a ghost.
Sorry if that was a little depressing, but it is my world right now...I so much want out
Anyone else willing to share how Lyme makes them feel would be appreciated, especially if you can relate to my experience.
Thank you all so much again...you are all one of my main pillars of support.
Greg
Posts: 17 | From Ventura, CA | Registered: May 2006
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I felt a lot like you describe for a number of years (when undiagnosed) all detached, undead, wonky -- horrible existence, I say! I also got terribly depressed and started having panic attacks and fits of uncontrollable rage. That eventually passed, and what came in its place was excruciating pain and eventually fatigue, too.
HOWEVER -- now, with treatment, I feel really great! I had been sick SO long (at least 18 years) that I had no idea what it felt like to feel "normal" -- now I'm begining to understand, and it rocks.
Hope that gives you some hope and help --
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Hi Please read "The Forgotten", a relatively short piece I wrote that describes the face of lyme disease, by the one who knows it best, its victims.
I think it will clearly state that which I would have to only reiterate here.
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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Or better yet, also pick up my book "The Singing Forest, A Journey Through Lyme Disease". There is a link on the site's home page if you are interested. It tells the story in my words. Take care
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
At my worst,
I felt like I was completed obliterated, drunk way beyond my means to the point of extreme paranoia and brain mush and had no knowledge where my body was in space as if I was walking on bubbles
compounded by being drunk, plus not knowing where my body was and looking through a fish bowl at the same time creating a constant wave of vertigo
and to top it off, I was in SEVERE severe head and face pain.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Greg,
I felt like I was in some weird, distracted universe...with things happening around me and to me but with no way of having any impact on anything. Also, I felt about 7 steps behind everything and everyone else. Similar to a misdubbed foreign film.
I had a lot of auditory distortion, so things sounded bizarre to me. I was driving one day and heard this peculiar sound that seemed to get more insistent. At the last minute I Irealized I was about to back into someone's car, and that sound was them honking.
I couldn't process thoughts. I remember being at a party. Several people were talking together, and I couldn't follow any of it. So I stood there and completely checked out mentally and emotionally.
Others have described my eyes as looking either distant or lifeless.
The exhaustion was a whole different thing. Exhausted, NOT tired. This was in an entirely different league. I would think about getting water, and I'd think: well, this would mean I have to stand up, pick up the glass...then walk to the kitchen, then turn on the faucet. Instead, I'd just sit there.
There was a horrible distraction and disconnect. I'd decide to have tea, turn on the burner then just walk away. I'd pull into the driveway, open the car door, get out and walk away. I wouldn't realize the car door was open until hours later.
I remembered wondering if I was scared but not really feelilng afraid. Not feeling much of anything, actually. Just dumbly sitting or walking.
Days became interchangeable and indistinguishable. The phone would ring...and I just couldn't get that together, so either my SO would grab it, or it would just keep ringing.
Oh, and the pain...my God, that awful searing, tearing ripping pain that would just to be off the scale awful. I would feel like someone was driving a screw driver into my knee or hip but nothing would show. If you looked, you couldn't see a thing.
That was at the worst of it, for the last three or four months when I was undiagnosed and the first 6 or 7 months of treatment. Just in the past few weeks, I've gotten this feeling of life back. My symptoms aren't all gone by any means, but I feel so much more alive than I did a year ago.
And every day now feels like a profound gift. Andie
Posts: 2549 | From never never land | Registered: May 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi Greg,
Lethargy doesn't begin to say it. It felt like when I've been in the pool for a couple of hours, then try to climb out. My legs felt like they weighed a ton apiece.
Andie, I remember that feeling of, "Am I hungry enough (or in need of the bathroom enough!) to have to get up out of this chair." And I was a professional dancer for years, used to being on the go all the time.
This past St. Patrick's Day, someone ran a stop sign and crashed through my car with their SUV, at about 45 miles an hour. Totaled my car, both airbags deployed, the whole bit. I was sitting there dazed, upset, hurting all over so that I couldn't tell where I was injured, and spaced so bad that the police officer asked for my license and I never did give it to him.
I was thinking that this was EXACTLY how I felt on Lyme! Thankfully, I have been off all antibiotics for about a year now, and though the accident threw me for a loop, I'm still doing pretty well.
So yeah, in shock feels like Lyme.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Its like a semi truck ran over me. Then driver 'thought' he might have hit something so he backed up to see. Backed back over me, didnt see anything and drove over me again, forward.
Pcp always asks what my pain scale is 1 to 10, I always tell her "Just 25" and dont tell me it doesnt go that far!!!Because I am --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
I have experienced a milder version of what the other folks have shared. I would add ups and downs which are pretty vexing.
I have been on abx for 15mos and have had very steady improvement. I am having bursts of normal energy!
posted
Wow, it sounds like I am not alone in my wonky-drunk-detached universe. It is great to hear that many of you are either mostly better or at least on your way there. It gives me hope that I CAN get better too. "Hanging in there" with this is the most difficult thing I have ever had to endure in my life, and I need that hope to go on, as it is soooo easy to lose. Thanks to you all.
Char, yes, I have an LLMD (Dr. G in California). Don't know if he is good 'cause he is the only one I have had. He seems pretty good, as he is open to and encourages alternative therapies such as herbs and Rife.
Greg
Posts: 17 | From Ventura, CA | Registered: May 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Shaz,
I had the same experience with an actual car accident:
About 6 weeks ago, someone broadsided me at about 50 mph at a median break. My car was totalled, witnesses couldn't believe what they were seeing.
I just sat there in this weird, dazed stupor. And somewhere in my mind, I remember thinking: this is what the worst Lyme days felt like.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Carol B
Unregistered
posted
Hey Andie My 17 year old daughter was just broadsided last week, pushed up onto the opposite curb. Car towed, we're driving a rental GrandAM compliments of other driver's insurance.
My daughter was pretty shaken up, but just bruises and cuts, no fractures. She hasn't driven since though.
My point being-I should tell her if she ever feels like she did during the accident and she is NOT in a car I should have her tested for LYME DISEASE.
SURREAL is the what I think it's called. Carol
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Surreal's a good word for it, Carol.
I'm really glad your daughter wasn't seriously hurt, but I also have to say I understand her reluctance to drive.
I'm still jumpy at intersections, and it's been about 6 weeks since I had the accident.
Mine was a hit-and-run...
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
Greg, you said you were barely hanging on at work. Did I sent you my private newbie links including my notes on how I was approved for ssdi, social security disability insurance, benefits.
If not, please PM me....2 people standing by an evelope, and I'll send it to your PM back.
I hope you are enable to receive PRIVATE MESSAGES, PM.
IP: Logged |
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Jeez, Andie, amazing!
So glad you are okay. I have a kid (with Lyme) at home, so I was VERY glad I was pretty much okay!
So if anyone says they feel like they've been "hit by a truck," there's 2 of us to verify that you DO. (Or at least, a SUV.... )
Don't let anyone talk you into thinking it is all in your head, or not that bad. It IS that bad.
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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