posted
Nope. I have no idea what "normal" is... was talking to someone about that just the other day.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I've heard it described as "hidden disability" when it's not obviously noticeable to the outside world that you're ill.
Normal, what's that like? Do you mean as in healthy?
I've been sick so long it's hard to remember the "feeling" of health. I can remember being healthy and doing more things in the past, but it's not a feeling.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I did a long Psychological Assessment few years back from interview , blot test , timed testing with blocks or puzzle like objects and a 100 or maybe more questionnaire.
I was still clueless about lyme still.
After few weeks I went back to go over my results and he told me I was normal in the 70% range or so.
But I told him I was not my normal self as psychologist did not know who I was before.
He recommended some counseling and antidepressants , I laughed at him and left as I could barely walk, shaking, all the typical lyme and bartonelia symptoms.
I could not believe he was telling me I was normal. I got a good chuckle from that.
Posts: 238 | From Where | Registered: Aug 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
If normal is feeling miserable physically, then yes. I feel miserable every moment, waking or sleeping, of mostly every day.
If normal is needing steroid nasal spray, two times the regular dose of allergy meds, pain meds, and asthma inhaler-then yes! Back to normal.
I am so frustrated this week.
I've needed to use my steroid inhaler for an awful asthma attack, and my allergies are so bad with the bleeding nose, I caved and used my steroid nasal spray. I feel like I am back to square one this week.
If this is my normal...geesh. May god strike me down this instant.
I often wonder if lots of people feel just as crappy but keep plugging away at their lives, pretending to not struggle to do everyday stuff.
I feel like I am watching life go by through a store window.
Staring in at the wonderful "life" for sale but not having enough money (energy) to buy it.
Geesh. I am a downer today. Sorry Kam. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
HA! I find it kind of weird that it is good to hear that you all don't do normal either.
No sorries needed Greta (can't spell apology correctly righ tnow
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I am feeling more normal than I did several years ago, so don't give up hope!!!
Four years ago I would walk down the hallway at work and my legs would give out and I would fall down (myoclonic jerks). I still have jerks occasionally, but don't fall any more.
Two years ago I could not walk without my walking stick at all and now I rarely use it. A year ago I could not handle much grocery shopping due to imbalance and not dealing with stimuli. A friend would do most of my shopping.
Now I can go to several stores in one "run".
Am I normal--not yet, but getting there.
Blessings to all.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8931 | From Illinois | Registered: Aug 2004
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payne
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Member # 26248
posted
normal, few times a month, its when I forget I have Lyme.. 2 hours here, 1 hour there.. once in a blue moon A whole day ! outta 29 days of torture... I too look in a mirror and think what can I show you that marks a illness my red eyes, my skin rashes, my feet or toes, my hands over time, bloating, swelling, sweating, my gate walk if you knew me daily my knees and joints cracking perhaps my smile, my teeth... the tears on my face ? Normal... its when people say "Its just old age" ugh
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
If I compare myself to others outside lives, I don't feel normal. Sitting at a child's b-day party yesterday, the mom's talked about
all their summertime planned vacations (extensive camping included) all the sports activities their children are in, etc.
Then, I start to get down on myself. I can't extend myself like others, need to preserve my energies for daily life tasks.
So I try to stay grateful for today- for the 30 minute walk I get to take looking at blue skies and flowers,
for my home, for the good stretches of the day my daughter had instead of the die off periods that were tough, keep note of her improving.
Keep reminding ourselves we're doing the best we can right now-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Normal....hmmm, not sure I have ever lived there before. The beauty of getting older is that I am beginning to enjoy not trying to live there!!
Lyme kind of smashes into whatever normal is and spins around like being stuck in the rinse cycle. Yeah, Lyme changes and morphs the body and mind around there is no balance or consistency.
I think we all do very well considering what we go through.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I think "normal" is what you make of it.
Our lives are not what they used to be, but I have learned to accept this is our "new normal".
We have great days, good days, not so good days and the occasional bad day too.
We try to make the most of every day - even when it's bad to try to see something positive.
Life is short, I've come to realize that - especially lately.
Surprise - I know exactly what you are talking about with listening to others and their summer plans.
So many people are SO busy though, that they forget the little things that so many take for granted.
Health, feeling good, quiet times with loved ones.
I try to look at it this way - I never appreciated my health so much until I didn't have it.
Watching my son fight this battle with such a wonderful attitude has kept me uplifted. He too, has a greater appreciation for health and happiness.
It has made us slow down, look around and notice things we might have been too busy before to really see.
It has made me realize who my true friends are and how few there really are - I am even more grateful for the few I have left.
So, to end a long rambling post - I have learned to accept and appreciate our "new normal".
It's not perfect, but it is okay.
Posts: 1408 | From Tx | Registered: Nov 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have short periods of time when I dn't feel sick.
I use to ahve it around 7 pm each night. I then took my sleeping med combo at 8 pm.
So, I would have an hour whle I laid in bed almost feeling normal.
I woke up one time without the pressure in my brain one morning...so cool.
But, as far as being able to move the body and o things...that was the same...not abl eto do much
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
normal? ha, I've never been normal.
I'm more abbynormal or nermal. lately I'd kill for one just plain ole ordinary day without pain.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Yeah. "Normal" or "kinda like my old self" is starting to happen every now and then, which feels like a miracle. Surely with some work to build up stamina that feeling can last. We gotta believe that, right?
Maybe I'm in denial, but I don't believe this reduced capacity of the past year of illness is my "new normal". Like hiker, I feel so much more functional than a few months ago, and expect that trend to continue.
I try not to focus on the fact that I am nowhere near the physically capable Amazon I was one year ago. I need frequent breaks, naps, my muscles have atrophhied, my hands go numb, my shoulders, back, wrists, legs ache, my heart is weak... but at least ___(fill in the blank something you couldn't do when at your sickest... like read, think, drive, or go an hour without crying)...
I also go through what payne describes, sometimes searching for visible signs of illness...
I don't know if anyone else worries about this, but I try to stay vigilent against letting the illness become sort of my only friend or identity; the health journalling can maybe easily morph from being a diligent patient to an unhealthy obsession.
Somehow I think that is mmore of a danger in us patients that live alone... unhealthy isolation.
Surprise, I think you nailed it on the head. I inevitably feel the worst when comparing myself to other people with "real lives". I'm embarrased to be so petty, but it's so hard not to envy friends and family for mundane things...
hugs and hang in there!
Posts: 121 | From Nc | Registered: May 2014
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GretaM
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Member # 40917
posted
Yes, agreed! Can't compare ourselves to others.
My theory is that 50 % of folks have a TBD, but most immune systems handle it.
So like Payne said, "old age", is an excuse they give for bad days.
I look mostly normal on the outside also except for my weird rashes and sores, my pallor (pale pale as death), and the fact I drip with sweat on everyone. Haha. Gross.
Some days I am grateful for those outward signs, as I find it annoying when others are adamant that I "look good!"
(When I feel anything but good haha).
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Kudzuslipper
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posted
I felt normal yesterday afternoon and today! It was such an odd phenomenon... I made note of it! What did I do? Why did I feel, well, normal? Not good, mind you. But I had much less pain, clear head, and ok energy. We've had great weather... I think longer days and sunshine help!
Posts: 1728 | From USA | Registered: May 2011
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beaches
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Member # 38251
posted
I honestly don't know what "normal" is. I have been sick for decades. I've been in pain for decades. I've had one or another form of arthritis for decades.
That's been my "normal" for most of my life, odd as it sounds.
I have days where I can't move and can't do a thing. But I have days where I can (have to) do loads of laundry, cook great meals, get through tons of paperwork.
I am a mother of sick kids. So for me, I don't have a choice when it comes to getting things done for my family. Unless I shop and cook, they don't eat healthy meals. If I don't do the laundry, they don't have clean clothes.
If I am not on top of my school system and all that ridiculousness, my daughter will not get her services.
I deal with so much every day I wouldn't know "normal" if it hit me in the head. Really, I wouldn't.
Posts: 1885 | From here | Registered: Jul 2012
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lyme in Putnam
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Member # 11561
posted
to me normal is myself, not pretending or having irrational thoughts and just having a regular day, like time not being distorted, knowing what to do with myself…reality, not living in unreality. Its been 4 straight years, not sure but pray God knows who I was and gets me oout of this. Losing hope. One minute at a time Kam. think my lyme is dormant from ondamed, why is this happening to me? Feel better, this is bad.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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GretaM
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posted
Wow! Congrats Kudzu! 2 days! That is awesome!!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Just realized my new normal is spending a lot of time laying on the bathroom floor.
It's cool there and near the toilet, and quiet, and no wifi signals in there.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
GretaM, I can relate to laying on the bathroom floor. Early on in this disease I spent a lot of time on the floor myself.
I have been on medicine for three years this July. This past year I have returned to feeling normal most of the time. I even took two short vacations last fall and last month.
However, I had to go off ABX for several days and on the 5th day the massive headaches I had came back. Back on abx now and guess it will be a while before I can wean myself off it to a maintenance plan.
So stick with your treatments and you should get yourself with time.
Posts: 68 | From NE | Registered: Aug 2012
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